Real-Life Advice: How These Women Keep Their Endometriosis Under Control
18 February 2018 by TORI CROWTHER

Endometriosis is a condition that affects one in 10 women in the UK, yet not many people know what it is, let alone know how to learn to live with it. Endometriosis is a condition in which pieces of tissue like the ones that lines the womb (endometrium) are found outside of the womb. The tissue is commonly found on the ovaries and fallopian tubes, abdomen, bowel, and bladder but can also be found in other parts of the body. It embeds itself on organs and can cause adhesions. The symptoms are varied but common ones include severe pelvic pain, fatigue, heavy and painful periods, and sometimes infertility.

Last year I had a phone call from the hospital calling me in for surgery to remove what could possibly be endometriosis. After many years of doctors’ appointments and misdiagnoses, I was relieved action was being taken, but kept thinking “should I be panicking at this point?” I’ve had a history of multiple medical “setbacks” (as I like to call them) so I was pretty laid back about it all. I was sent home after surgery with an endometriosis leaflet and told I’d be fully recovered from the surgery and disease in three to seven days (spoiler: there is no full recovery or cure for endo and I didn’t know this). Three weeks later, I was still bed bound and completely unprepared for the diagnosis or recovery. I was in my final year at university, writing a dissertation, about to turn 21, and unable to walk more than five minutes. Nevertheless, due to my stubborn nature, I powered through ignoring any post-surgery symptoms, subsequently making them worse. I was ill and frustrated, and eventually I took to the internet to find out how I could help myself.

Endometriosis has no definite cure and has a wide range of symptoms with an average diagnosis of seven-and-a-half years. It is a debilitating condition, but many suffer in silence due to unresolved symptoms or misdiagnosis. Many women feel powerless, labelled hypochondriacs in their journey to diagnosis. Despite the increasing recognition and awareness for the disease, there is little to actually help women live through their symptoms happily. Painkillers and rest may help, but life goes on and many of us have to work through our symptoms regardless of our current health status. Sharing can help immensely with empowering women physically and mentally to live a fulfilled life with the condition.

I asked nine women who suffer from endometriosis to share their tried-and-tested tips and hacks on how to live happily and as free of pain as possible. Even if you don’t suffer from endometriosis, these tips could help ease period pain or simply help you understand the condition a bit more.

Remember, it is your body, your choice

Become your own health advocate: “Take time to research your condition to find out what treatments are available to help you heal medically, physically, and holistically.”

Diary: “When seeing your GP or consultant take a pain and symptom diary with you and don’t leave until you are comfortable with the options you have been given.”
– Katie, London

Join a support group

Exercise for a better YOU: “When it comes to working out I’ve often resorted to extreme of overdoing things by working out every day or doing nothing at all. It took me along time to realise that neither approach has worked well to enable me to be the healthiest version of myself”

Communicate: “I’ve spent much of my time pre- and post-endometriosis diagnosis feeling really scared and frustrated that many of the people in my life just don’t seem to get what I’ve been going through . . . In my experience, a problem shared is often a problem halved. Joining a support group has been the single best and biggest thing that I have done to support myself on this journey with endometriosis. Joining a support group can help you find others that share experiences and can offer support and advice.
– Claire, Hertfordshire

Heal through Yoga

Yoga stretches: “Sometimes the pain is there and it’s too late to do the preventative stuff, so it’s about managing the discomfort at that moment. I find gentle yoga stretches are so helpful for this. The feeling of the stretches distracts me from the physical pain and gives my brain something else to focus on.” Find these exercises over on Jessica’s website.

Endo Diet: “I generally follow the endometriosis diet and personally, caffeine and sugar are pretty much guaranteed to give me some level of pain. I love coffee, so this is a real work in progress”.

Keep on top of tiredness: “I have disturbed sleep and when it was at its worst, I was seriously depressed . . . my body just can’t cope with the chronic condition, the fatigue that comes with that and being extra tired on top. I now try to get to bed by 10 p.m. . . . I still feel tired everyday, but it’s manageable”
– Jessica, London

Good GP = good referral = good care

Don’t doubt the hot water bottle: “My heat pad or hot water bottle is a godsend. The heat helps any muscular cramps and contractions” Aimee uses heat pads that strap on with Velcro but wears them the wrong way round to get the heat on the pain source lasting hours.

Take it easy and be OK with that: “I have to remind myself it is is OK to do the minimal during a flare. It’s hard not to feel guilt but if I’ve had to take strong pain relief and still struggling with the pain, sometimes there’s nothing else for it than climbing back into bed or having a duvet day.”

GP: “Try to get a GP that understands endometriosis or at the very least gynaecology-related problems and can help with referrals, sick notes, prescriptions, and even accommodate with emergency appointments if symptoms are severe.”
– Aimee, Nottinghamshire

Quit being so hard on yourself

Heat, heat, heat: “If all else fails, get a hot water bottle and give it a good old hug. Get Netflix on, and sit with the hot water bottle over your pelvis with microwavable wheat bags for neck and shoulder pain.” Don’t forget that go-to period pain favourite, the hot water bottle, sometimes it can be the best pain reliever.

It’s not your fault: “If you catch your inner voice telling you, you ‘should’ be able to do things you can’t, stop, take a breath and think to yourself ‘what would I say to a friend?’ It’s likely a friend would tell you are incredibly strong and to give yourself a break.”
– Laura, London

Try everything once

Get online: “Having a chronic illness can be super isolating and quite often you’ll feel like the only person facing all these issues, but getting online and speaking to other women, helping them and getting the same in return has been the best support system I could have ever wished for.”

Pace yourself: “Take a few minutes out of whatever you are doing to have a little rest. You aren’t a superwoman and you can’t do everything at once and that’s perfectly okay.” This is a tip everyone needs to remember once in a while.

Try everything once: “We all have our doubts from time to time over the treatment options we are offered by our healthcare providers. Remember, just because it didn’t work for one person doesn’t mean it won’t work for you!”

Rethink that coffee and wine: “Try to cut back on caffeine and alcohol as much as possible. A boring one I’m afraid, but alcohol always made my endo angry!”
– Shireen, Leicestershire.

Acceptance

Build a support network: “An important part of the journey is allowing yourself to get both help and support from others. This has been vital to me. Acceptance is not about giving up but recognising that you may need to do things differently than you have done in the past.”

It’s not an excuse: “One thing I was worried about with going public with my disease was people’s perception of me changing. As mentioned previously, I don’t want to appear weak or incapable of doing things. I don’t want people to think I am using my disease as an excuse for not meeting up, or pulling out of a gym session, or not getting into work for the day.”

Vitamins and supplements: “One of the symptoms I have struggled to adjust to the most is the dizziness. I now take Bioglan Women’s Multi-Vitamins on a daily basis; they have given me a huge sense of relief.”
– Amy, Essex.

Bring help

Heat pads: “I won’t go anywhere without carrying heat pads on me. The best I have found if you are active/at work are the ones that strap right round your stomach and back. They last for a good eight to 10 hours. I keep them in my draw at work, and even knowing they are there for the bad days is a comfort!”

Appointments: “I have found it much easier if I write notes/chat with a family member about any up and coming appointments. I take the notes in and refer to them if necessary. Most of our symptoms are complex and it’s good to be able to explain them in detail. I also bring someone in with me if I can so they can remember/write notes during the appointment. And don’t be afraid to ask the consultant questions!”
– Beth, Cardiff.

Read up

Don’t wait: “I was diagnosed right before my wedding and was distracted and in denial that I was sick, so waited too long to get help.”


Experienced Doctors: “The hardest thing was finding a good doctor. Few doctors are really experience in Endometriosis. Don’t give up and continue to advocate for yourself until you find a good doctor. Dr. Seckin, an Endometriosis specialist in NYC wrote a book about treatment and advice.”


Therapy: “I am continuing to have pelvic floor disfunction after surgery. Pelvic physical therapy and massage therapy is really helping me recover.”
– Catie, New York.

Trust Your Instincts When It Comes to Your Health
November 6, 2017
by Shireen Hand

Having lived with the symptoms of endometriosis for about 21 years now ― 12 of those diagnosed ― I’ve had my fair share of moments when I’ve felt that things do not feel quite right with my health. I’ve questioned a diagnosis or even reeled things off to doctors that I suspect might be happening with my health. I’ve been told to stop Googling symptoms and asking so many questions. It can become disheartening, especially when you want answers or if you are chasing a diagnosis.

I want to use one occasion as an example. In 2009, I began to experience pain in my right shoulder. It hurt, it ached, it was difficult to move my arm and neck because of the pain and it made me feel sick. It was a deep, gnawing pain that made you want to dig your fingers into your shoulder blade, much like when you dig your tongue into an aching tooth. I initially thought I had been sleeping in an odd position. But I started to notice that it really only hurt when I was on my period. When I next saw my doctor, I asked if it could be related. It had to be. He laughed at me and said it definitely wasn’t related. And that was that.

I knew something wasn’t right and I was in pain with it every month. Sometimes, it would randomly start hurting when I wasn’t on a period too. I made sure to mention this pain to my specialist as soon as I saw him for my next checkup at the hospital. After all that time, I was still a little taken aback when he said that a pain in your shoulder area could indicate diaphragmatic endometriosis. He told me that he had previously checked my diaphragm and it was clear of endometriosis, but he would check it at my next surgery. Which he did, and there it was: dots of endometriosis. The reason behind all these pains.

However coincidental the pain seemed to be, I always thought that it couldn’t be endometriosis. I mean, this pain was in my shoulder! It was about as far away as it could get from the normal abdominal pains I was so used to having. And, at this time, I still was pretty lost when it came to endometriosis. I had only been diagnosed for four years and I still didn’t know much about it all. I was yet to find the amazing support system of online endo sisters. But I knew my body, followed my instincts, and knew that first doctor was wrong.

I still have moments when I feel anger toward him. How many other women had come to him with issues linked to menstruation and had been laughed at? How many other women had he let down by not listening to them? But he did teach me one thing, and I believe it’s one of the most important things for any woman with endometriosis to know: Follow your instincts.

Listen to what your body is telling you. If you are dealing with discomfort on a regular basis, look for a pattern or make a note of when that pain is happening. Does it coincide with anything else? Does it coincide with your period, perchance? Ask questions ― not only with your health practitioners, but also ask women online if you can. Scour the internet for clues. If I hadn’t asked, if I hadn’t followed my own instincts, I would probably have never gotten my answer. And, remember this, no one knows your body better than you. No one else knows how you are feeling and I would assume the majority of our own doctors have never had endometriosis, so it’s as much our job to educate them as it is for them to educate us.

Speak up and be heard, ladies, and get your answers.

You can follow more of my journey over at www.emlwy.com.

**Note from Living With Endometriosis: Many websites out there are still saying that endometriosis results when the lining of the uterus is found outside of the uterus.
THIS IS NOT TRUE.
The ACTUAL definition is that Endometriosis results when tissue SIMILAR to the lining of the uterus grows in other places in the body.
Until the rest of the world catches up to this relatively new knowledge, I will refuse to link to those webpages which define endometriosis with outdated information, and I will write to the site admins to educate them as to the updated definition.

How Women on the Internet Help Me Navigate Endometriosis
February 28, 2018
by Tori Crowther

After my endometriosis diagnosis, I honestly didn’t know where to start when it came to alternative treatment options. I’d already had surgery, which did help my symptoms, but I was by no means cured. I found myself needing more than what doctors were offering. There was very little information given to me, and after being told by a specialist to just return when my pain got “bad enough for another surgery,” I realized I was going to have to do some research for myself and figure out how to minimize my symptoms in other ways.

If you’re unfamiliar, endometriosis affects one in 10 women, but despite being a common condition, it’s underresearched and very often misdiagnosed — so much so, the average diagnosis time is a staggering 7.5 years!

I’ve had multiple appointments with doctors about my endometriosis, and after asking my consultant what dietary changes I could make to ease inflammation, I was told “there is no scientific evidence to prove diet makes a difference, so that won’t help.” FYI, a specific endometriosis diet exists *eye roll*, and this book helped me. I knew I had to take matters into my own hands. But it wasn’t private health care or specialists I turned to, it was strangers on the internet.

I found support groups, personal blogs, and Twitter accounts dedicated to supporting women with endometriosis and sharing experiences. I followed these accounts, read up on their stories, and realized that I wasn’t alone in my unpredictable symptoms. I got in touch with women while researching ways to cope day-to-day with the condition and ended up communicating with many of them on a semiregular basis.

Their conditions vary; some also have adenomyosis, some are unable to continue working, and some are sadly sharing their experiences with infertility. These women share their struggles, their triumphs, and their experiences with different treatments. This offers support that you probably won’t find in a doctor’s office. Fortunately, I am still able to work and my endometriosis isn’t as severe as a lot of these women, but they offer support in a way that others may not understand. I am still trying to figure out how to adapt my life to not “overdo it”; this means finding exercises that don’t aggravate my pain but still allow me to be active. One of these ladies suggested yoga, and now it’s an integral part of my routine to keep my pain minimal.

The online community is also a great way to communicate with other women about their experiences with treatments that aren’t yet widely researched. I asked a few women what their experiences were with Zoladex infections, as this is a treatment I was offered. I came to the conclusion that, despite what doctors were suggesting, it wasn’t a path I was ready to go down yet. Thanks to firsthand advice from women really going through it, I was able to make an informed decision.

So here’s to all the women on the internet who literally help each other to get through a day at a time, despite the difficulties and pain that get in the way. The internet offers a support system that wasn’t available to the generation before us, and I’m so grateful to have it. I’ve included some blogs below that may help you if you’re looking for firsthand experiences or advice or you just want to read up on the condition.
• This Endo Life
• Chronic Writer
• Laura Chamberlain
• Not The Endo The World
• Emlwy

Women with endometriosis need support, not judgement
March 2 2015, 2.20pm EST
by Kate Young, Jane Fisher and Maggie Kirkman

Known for years as the “career woman’s disease” based on the idea that women without children develop disease in their reproductive organs, endometriosis is a painful condition thought to affect one in ten women worldwide.

The condition occurs when tissue similar to the lining of the uterus (that is, the endometrium) grows outside the uterus. These tissues implant in and form lesions on organs such as the ovaries, bowel and bladder. The condition can only be definitively diagnosed through surgery and because people often don’t believe the symptoms being reported by women, diagnosis is often delayed.

There’s no cure and the cause of the condition is unknown. Treatments include hormonal therapy to inhibit growth of the disease and surgery to remove the lesions, but these often provide only short-term relief. And they have significant side effects, such as loss of bone density and the formation of scar tissue that can cause organs to fuse together.

In the absence of a cure and effective long-term treatment, we need to turn our attention to how doctors and loved ones can provide care and support to women with endometriosis.

Living with endometriosis

In a systematic review of studies we published late last year, we found the condition affects all areas of women’s lives. All the studies we looked at used qualitative research methods to examine women’s experiences of endometriosis. This kind of research, which involves interviews and focus groups, is useful for capturing experiences that numbers and statistics cannot.

Women spoke about the benefits of “taking charge” of the condition. They educated themselves about it and tried to destigmatise discussion of gynaecological health with their family, friends and intimate partners.

Many took it upon themselves to manage symptoms with whatever resources they had. Some changed their diet, for instance, while others re-arranged their work and social commitments.

Women’s accounts of their condition showed that the way endometriosis was acknowledged by other people, such as their doctors, intimate partners and employers, could influence their experience of it. This could be positive if, for instance, partners educated themselves about the condition and helped manage it.

Or negative if, say, family members refused to acknowledge the illness was real and not “just” bad period pain. And when little support was given, that made managing symptoms a bigger burden.

Economics of endometriosis

Endometriosis is an expensive disease. One of the factors contributing to its cost is the delay in diagnosis, which takes an average of five and a half years. In the meantime, women are often subjected to unnecessary investigations and treatments, all of which cost money. Then there’s the cost of the surgery required for diagnosis, and further surgical treatment.

In our research, women highlighted the adverse impact of endometriosis on their ability to work. They spoke of the difficulty of performing certain tasks when under the effects of strong pain killers.

With symptoms such as intense pelvic pain during menstruation and at other times, heavy menstrual bleeding and bowel and bladder problems, including cyclic diarrhoea and constipation, it’s not surprising that some women with endometriosis find it difficult to stay in paid employment.

So although health-care costs are substantial, income loss from this chronic – and, for some, disabling – condition is estimated at almost twice as much. There’s little published Australian data about the cost of the average annual loss of productivity. Calculations would need to cover both absenteeism and reduced productivity when at work.

And many women feel uncomfortable about having to explain a gynaecological condition to employers, particularly male managers.

The right support

The accounts in our review show there are things that can be done to accommodate symptoms and support women’s economic participation. Women spoke of the need for increased flexibility in the workplace, such as the option of working from home and the ability to arrange hours to suit medical appointments.

Our review also identified techniques clinical practitioners could use to facilitate better support for women with endometriosis from those around them. They could offer letters for employers, for instance, suggesting flexible workplace practices would enable women to fulfil the demands of their jobs as well as manage the condition.

For some women, sex is painful some of the time and clinicians could also offer to discuss the effect of endometriosis on the women’s sex life. Our review found few women reported their doctor asking about the effect of endometriosis on their intimate relationships and some were embarrassed to bring it up themselves.

While the idea of modifying social practices to improve the health and well-being of women with endometriosis may not have the glamour of a new drug or imaging technique, these are affordable, timely measures that women with the condition have identified as valuable.

Research into finding a cure or effective long-term treatment for endometriosis is important, but it shouldn’t be our only goal. Rather, we should work together to create an environment that fosters women’s agency in the face of this chronic illness.

For The Endo Girls: What NOT To Say To A Woman With Endometriosis
by Kelle O’Connell
July 7, 2013

Endometriosis is a condition that occurs when the lining of a woman’s uterus grows in places outside of the womb causing chronic pain, internal bleeding, and often infertility.
The average time it takes for a woman to receive an accurate endo diagnosis is 10 years.
I share about this on my blog in hopes of raising awareness, decreasing that average diagnosis time, and providing a small resource for my “endo-sisters” out there.

In dealing with all the emotional and physical pain that comes with endometriosis, there are a lot of situations where kind-hearted people want to offer support, but don’t know what they should say. And often, in an effort to be loving and comforting, they end up being accidentally insulting.

So I am sharing a few less-than-helpful comments that I’ve heard from nurses, doctors, friends, family, and coworkers multiple times.

Not to embarrass anyone who has said these things to me, but to hopefully explain why these things aren’t appropriate to say to women with endometriosis and provide some positive alternatives for moments when well-intentioned people are looking to provide comfort.

If you know a woman who is suffering with endometriosis, please don’t say….

“Have you tried Ibuprofen?”

This is a really common one. I even got asked this a few times in the Emergency Room, while I was crying in pain. Women with endometriosis have often been dealing with severe, chronic pain for at least 5-10 years. Just go ahead and assume that at some point, they’ve tried Ibuprofen, Midol, and anything else they could get their hands on in the medicine aisle of their local grocery store. And for the majority of the time, those pills do not even touch the pain which is why they turn to heavier medications.

“I mean, you look like you feel well so it can’t be that bad.”

This one’s always a little rollercoaster for me. Starts as a compliment, ends as an insult. “Thanks! Oh, waiiiit… that’s not a compliment, you think I’m a liar.” Endometriosis is labeled as an “invisible illness”. Everyone’s body handles it differently. Some women have severe bloating in the abdomen and you may be able to tell when someone looks tired, but just because someone has learned to function in their life and brush their hair through their flare ups, doesn’t mean their pain doesn’t exist on an extreme level.

“You just want people to feel sorry for you.”

Most girls with endometriosis who decide to share their experiences, do so for several reasons :

1. they want to raise awareness for a disease that many people have never heard of.
2. they want to explain themselves to the friends they constantly flake on or the boss they’re calling in sick to
3. they want to connect and relate with other girls with endometriosis

Attention and sympathy don’t come up on that list. I guess maybe for some girls, but not for most.

“If there isn’t a cure, you’re going to need to just toughen up and get over it.”

First of all, don’t ever let someone take away your hope like that. There isn’t a cure but there are many treatments that women have found relief from. It’s a long process, but eventually improvement can be found if the right treatment is introduced to the right person. Second of all, women with endometriosis are tough so much of the time. This goes back to endometriosis being an ‘invisible illness’. People assume it’s something small enough that you can get over it, but it’s not. It’s emotionally, physically, and mentally draining on every level. Keep your hope but don’t ever feel like you should be able to ‘get over it’.

“It could be worse, at least you don’t have cancer.”

I never know what to say to this, so I will just share one quick quote from a doctor I recently started seeing. He is a naturopathic doctor, married to a woman who was having surgeries for her endometriosis every 2 years, like many women do, with no relief from pain. He went into natural medicine to try and find a way to help her because he saw the struggle firsthand and couldn’t believe the lack of understanding that the surgical professionals had about endometriosis cases. His words at my appointment validated me more than anything ever has :

*

“People who haven’t seen it firsthand refuse to see endometriosis as something serious and detrimental because it isn’t life threatening. No, it isn’t going to take your life. It’s just going to stop it completely. You’ll be alive, but incapable of living. You’ll work twice as hard for half the success in life. It’s not living at all.”

Every day, I am very thankful that my condition is not worse, but please do not belittle the struggle I’m going through by saying something like “at least it’s not [insert other disease].”

“I knew a girl who had that and she was fine.”

Endometriosis targets every woman differently. The same diet doesn’t work for everyone. The same treatments don’t work for everyone. The same surgeries don’t work for everyone. Everyone is different. I’m glad your friend was fine. She’s very fortunate.

“You’re so lucky, I’d love to take that many days off of work.”

** I live in constant fear that I am going to lose my job because of how many days I am unable to get out of bed and get to work. And those days that I miss are miserable because I’m sitting at home, taking medicine that I need a paycheck to afford, but not able to work for that paycheck. It’s not a vacation. It’s an anxiety ridden, terrible, painful situation. I would give anything to never call in sick again. Nothing about that is lucky.

“You just need a more positive attitude.”

A positive attitude isn’t going to detach endometrial adhesions from the sides of organs. A positive attitude isn’t going to give an woman with endometriosis a sure chance at children. A positive attitude can be helpful for a person mentally, but after years of surgeries, procedures, medications, doctors appointments, and emergency room visits, sometimes it’s really hard to keep that positive attitude. And that’s okay. You’re allowed to be sad and discouraged sometimes.

And my absolute least favorite….

“Yeah, I have cramps today too.”

::insert screetching brakes sound here::

Endometriosis is not cramps. It’s not even “bad cramps”. It’s chronic pain caused by internal bleeding and inflammation. There are two types of endometriosis pain : tolerable and intolerable. It can’t be solved with over the counter medication or a heating pad. It’s not the same thing as cramps. When they have an endometriosis flare up, most women are unable to move at all. Comparing that to cramps is incredibly degrading.

– – – – –

Again, I understand the people who said these things had good intentions and were just trying to provide help in some way, but these words cut more than they heal.

So what should you say?

The next time you see a woman going through the pain of endometriosis, instead of telling her it could be worse or that she needs a better attitude, you can tell her you think she’s a strong person, because she is.

Or instead of telling her that she looks good so she must feel well, you can tell her that you admire her ability to handle pain as gracefully as she is.

Instead of telling her she is lucky to be sick and you wish you could call-out too, you can tell her that you’re sorry she had to miss work. You know that must suck. Or you can ask if there’s anything she needs.

And there probably won’t be anything! There’s not a whole lot that anybody can do, she just has to wait it out. Better days will come. But your consideration and willingness to help will mean the world and will provide much more comfort than any other recommendation or “advice” you could give her.

For the endo girls : Did I leave out any that you’ve heard often? What would you rather have someone tell you instead?

To the rest of you, as always, thank you for reading and allowing yourself to be more informed.

Love and blessings to all of you. xoxo

– – – – –

* The doctor quote above reminds me of another endo sister’s blog entry from 2012:

Am I Even Living?
by Larissa
October 7, 2012
It’s been so long since I’ve posted due to FINALLY moving into my own house. I’ve been so very busy lately. Also, with my mom starting chemo, I have no time on my hands.

But lately, I have really overdone myself. Physically and emotionally. So my endo is pissed at me. Struggling a lot lately with severe pain, missing work because of it, and finally scheduling another surgery hopefully for November, around thanksgiving so I don’t miss much work. And of course, with a miserable endo flare up, comes terrible immune system issues. Trying to fight off a cold 🙁

I’ve been trying to explain to people the pain lately, especially coworkers and family and friends. It seems like no one gets the severity of endo. I have to mention the ER for someone to realize “oh man she’s in pain”. But little do people know, the ER does nothing for an endo patient and most ob/gyn’s will tell you the same. Since endo is an internal disease, that basically causes a war with other areas and organs, we don’t look sick, and therefore drs are unsure of what’s going on until the cut us open. Endo can’t even be diagnosed until surgery. So going to the ER means laying there, getting drugged with ivs. Sometimes when the pain is as severe as it has been, and I’m unable to go to the drs, I will go to the ER for some type of temporary relief. But this brings me to my next point.

Meds do not help endo. I have a cocktail of meds I’m on and have been on a LOTTT of pain meds even. Meds CAN take off the edge of pain, but usually that means being so drugged out and sleeping. It’s not the meds or the kind of meds that are the concern, it’s the disease. It’s a TERRIBLE, ugly disease, with no cure. My Dr made a good point thursday, every medication, procedure, surgery the do is only a “band aid” for the time being. It all comes back.

With this, I have been EXTREMELY discouraged, depressed, and down with the disease lately. I’m happy I’m alive and living, but what kind of life am I living exactly when I’m in excrutiating pain to where I can’t get out of bed, can’t work, can’t drive, can’t eat, can’t function. I want to finally feel like I’m living, not just surviving.

** Living in fear of losing our jobs because of our illness is one of the top 5 reasons why we are so stressed out. Many of us have been discriminated against in the workplace or outright fired. I’ve been fired for having this illness. Kelle’s sentiments above echo my own blog posts from August 15, 2008 and October 4, 2009.

Many thanks to Laurie Haughton on Facebook’s Endometriosis Support Sisters/ Awareness Group for sharing this article.

Prescription Painkiller Addiction: 7 Myths
Experts Debunk Myths About Prescription Pain Medication Addiction
By Miranda Hitti
Reviewed by Louise Chang, MD
WebMD Feature
 
Prescription pain medicine addiction grabs headlines when it sends celebrities spinning out of control. It also plagues many people out of the spotlight who grapple with painkiller addiction behind closed doors.
 
But although widespread, addiction to prescription painkillers is also widely misunderstood — and those misunderstandings can be dangerous and frightening for patients dealing with pain.
 
Where is the line between appropriate use and addiction to prescription pain medicines? And how can patients stay on the right side of that line, without suffering needlessly?
For answers, WebMD spoke with two pain medicine doctors, an expert from the National Institute on Drug Abuse, and a psychiatrist who treats addictions.
 
 Here are seven myths they identified about addiction to prescription pain medication.
 
1. Myth: If I need higher doses or have withdrawal symptoms when I quit, I’m addicted.

Reality: That might sound like addiction to you, but it’s not how doctors and addiction specialists define addiction.
 
“Everybody can become tolerant and dependent to a medication, and that does not mean that they are addicted,” says Christopher Gharibo, MD, director of pain medicine at the NYU Langone Medical School and NYU Hospital for Joint Diseases.
 
Tolerance and dependence don’t just happen with prescription pain drugs, notes Scott Fishman, MD, professor of anesthesiology and chief of the division of pain medicine at the University of California, Davis School of Medicine.
 
“They occur in drugs that aren’t addictive at all, and they occur in drugs that are addictive. So it’s independent of addiction,” says Fishman, who is the president and chairman of the American Pain Foundation and a past president of the American Academy of Pain Medication.
 
Many people mistakenly use the term “addiction” to refer to physical dependence. That includes doctors. “Probably not a week goes by that I don’t hear from a doctor who wants me to see their patient because they think they’re addicted, but really they’re just physically dependent,” Fishman says.
 
Fishman defines addiction as a “chronic disease … that’s typically defined by causing the compulsive use of a drug that produces harm or dysfunction, and the continued use despite that dysfunction.”
 
For instance, someone who’s addicted might have symptoms such as “having drugs interfere with your ability to function in your role [or] spending most of your time trying to procure a drug and take the drug,” says Susan Weiss, PhD, chief of the science policy branch at the National Institute on Drug Abuse.
 
“Physical dependence, which can include tolerance and withdrawal, is different,” says Weiss. “It’s a part of addiction but it can happen without someone being addicted.”
She adds that if people have withdrawal symptoms when they stop taking their painkiller, “it means that they need to be under a doctor’s care to stop taking the drugs, but not necessarily that they’re addicted.”
 
2. Myth: Everyone gets addicted to pain drugs if they take them long enough.
 
Reality: “The vast majority of people, when prescribed these medications, use them correctly without developing addiction,” says Marvin Seppala, MD, chief medical officer at the Hazelden Foundation, an addiction treatment center in Center City, Minn.
Fishman agrees. “In a program where these prescription drugs are used with responsible management, the signs of addiction or abuse would become evident over time and therefore would be acted on,” says Fishman.
 
Some warning signs, according to Seppala, could include raising your dose without consulting your doctor, or going to several doctors to get prescriptions without telling them about the prescriptions you already have. And as Weiss points out, being addicted means that your drug use is causing problems in your life but you keep doing it anyway.
 
But trying to diagnose early signs of addiction in yourself or a loved one can be tricky.
“Unless you really find out what’s going on, you’d be surprised by the individual facts behind any patient’s behavior. And again, at the end of the day, we’re here to treat suffering,” says Fishman.
 
Likewise, Weiss says it can be “very, very hard” to identify patients who are becoming addicted.
 
“When it comes to people who don’t have chronic pain and they’re addicted, it’s more straightforward because they’re using some of these drugs as party drugs, things like that and the criteria for addiction are pretty clear,” says Weiss.
 
“I think where it gets really complicated is when you’ve got somebody that’s in chronic pain and they wind up needing higher and higher doses, and you don’t know if this is a sign that they’re developing problems of addiction because something is really happening in their brain that’s … getting them more compulsively involved in taking the drug, or if their pain is getting worse because their disease is getting worse, or because they’re developing tolerance to the painkiller,” Weiss says.
 
“We know that drugs have risk, and what we’re good at in medicine is recognizing risk and managing it, as long as we’re willing to rise to that occasion,” says Fishman. “The key is that one has to manage the risks.”
 
3. Myth: Because most people don’t get addicted to painkillers, I can use them as I please.
 
Reality: You need to use prescription painkillers (and any other drug) properly. It’s not something patients should tinker with themselves.

“They definitely have an addiction potential,” says Gharibo. His advice: Use prescription pain medicines as prescribed by your doctor and report your responses — positive and negative — to your doctor.
 
Gharibo also says that he doesn’t encourage using opioids alone, but as part of a plan that also includes other treatment — including other types of drugs, as well as physical therapy and psychotherapy, when needed.
 
Gharibo says he tells patients about drugs’ risks and benefits, and if he thinks an opioid is appropriate for the patient, he prescribes it on a trial basis to see how the patient responds.
 
And although you may find that you need a higher dose, you shouldn’t take matters into your own hands. Overdosing is a risk, so setting your dose isn’t a do-it-yourself task.
 
“I think the escalation of the dosage is key,” says Seppala. “If people find that they just keep adding to the dose, whether it’s legitimate for pain or not, it’s worth taking a look at what’s going on, especially if they’re not talking with the caregiver as they do that.”
 
4. Myth: It’s better to bear the pain than to risk addiction.

Reality: Undertreating pain can cause needless suffering. If you have pain, talk to your doctor about it, and if you’re afraid about addiction, talk with them about that, too.
“People have a right to have their pain addressed,” says Fishman. “When someone’s in pain, there’s no risk-free option, including doing nothing.”
 
Fishman remembers a man who came to his emergency room with pain from prostate cancer that had spread throughout his body. “He was on no pain medicine at all,” Fishman recalls.
 
Fishman wrote the man a prescription for morphine, and the next day, the man was out golfing. “But a week later, he was back in the emergency room with pain out of control,” says Fishman. “He stopped taking his morphine because he thought anyone who took morphine for more than a week was an addict. And he was afraid that he was going to start robbing liquor stores and stealing lottery tickets. So these are very pervasive beliefs.”
 
Weiss, who has seen her mother-in-law resist taking opioids to treat chronic pain, notes that some people suffer pain because they fear addiction, while others are too casual about using painkillers.
 
“We don’t want to make people afraid of taking a medication that they need,” says Weiss. “At the same time, we want people to take these drugs seriously.”
 
5. Myth: All that matters is easing my pain.

Reality: Pain relief is key, but it’s not the only goal.
“We’re focusing on functional restoration when we prescribe analgesics or any intervention to control the patient’s pain,” says Gharibo.
 
He explains that functional restoration means “being autonomous, being able to attend to their activities of daily living, as well as forming friendships and an appropriate social environment.”
 
In other words, pain relief isn’t enough.
 
“If there is pain reduction without improved function, that may not be sufficient to continue opioid pharmacotherapy,” says Gharibo. “If we’re faced with a situation where we continue to increase the doses and we’re not getting any functional improvement, we’re not just going to go up and up on the dose. We’re going to change the plan.”
 
6. Myth: I’m a strong person. I won’t get addicted.

Reality: Addiction isn’t about willpower, and it’s not a moral failure. It’s a chronic disease, and some people are genetically more vulnerable than others, notes Fishman.
“The main risk factor for addiction is genetic predisposition,” Seppala agrees. “Do you have a family history of alcohol or addiction? Or do you have a history yourself and now you’re in recovery from that? That genetic history would potentially place you at higher risk of addiction for any substance, and in particular, you should be careful using the opioids for any length of time.”
 
Seppala says prescription painkiller abuse was “rare” when his career began, but is now second only to marijuana in terms of illicit use.
 
Exactly how many people are addicted to prescription painkillers isn’t clear. But 1.7 million people age 12 and older in the U.S. abused or were addicted to pain relievers in 2007, according to government data.  
 
And in a 2007 government survey, about 57% of people who reported taking pain relievers for “nonmedical” uses in the previous month said they’d gotten pain pills for free from someone they knew; only 18% said they’d gotten it from a doctor.
 
Don’t share prescription pain pills and don’t leave them somewhere that people could help themselves. “These are not something that you should hand out to your friends or relatives or leave around so that people can take a few from you without your even noticing it,” says Weiss.
 
7. Myth: My doctor will steer me clear of addiction.

Reality: Doctors certainly don’t want their patients to get addicted. But they may not have much training in addiction, or in pain management.
 
Most doctors don’t get much training in either topic, says Seppala. “We’ve got a naive physician population providing pain care and not knowing much about addiction. That’s a bad combination.”
 
Fishman agrees and urges patients to educate themselves about their prescriptions and to work with their doctors. “The best relationships are the ones where you’re partnering with your clinicians and exchanging ideas.”

I am posting the article below with reservations. While there are some good points made, I wholly disagree with the website and the pushing of the book from said website. Of the traits below, they ask you to identify which ONE describes you. I say MANY of the traits describe we who deal with chronic debilitating pain. But my criticism of that website does not end, here.

Read the 12 traits, because they present with good advice. Then please read my warning that follows.

12 Traits That Help Us Overcome Adversity and Become Survivors
By The Survivors Club Staff

We are all equipped with unique traits that make us survivors. We overcome the adversity in our lives by employing these tools, sometimes unknowingly. Whether it is a battle with cancer or a run in with a bully on the playground, we deal with crises in our own unique ways. The following 12 traits help each of us get through difficulties in our lives and make us part of The Survivors Club. Which one describes you?

Adaptability
With the skill of adaptability you have the capacity to adjust to new situations and change your attitude and behavior to handle new challenges as they arise. When an obstacle gets in your way, you can modify your approach to accomplish your goals. You quickly let go of the way it used to be and use new strategies and tactics to fit the emerging reality. More than any other psychological strength, adaptability determines who gets into the Survivors Club.

Resilience
You have the ability to bend like a tree in the wind. But you will not break in the face of any adversity in your life. You have the power to rebound and recoil back to your feet. You get up when you are knocked down and continue forward persevering through these hard times. You keep trying even when others around you have fallen off or quit. You refuse to give up.

Faith
Faith is the most powerful and universal survival tool. You trust that God or a higher power has a plan and will look after you. You will be steered through difficult times and trust that you will be given guidance on your actions. If you listen, you will be shown the way. In a crisis, faith gives you remarkable power and confidence to prevail in the face of any form of adversity.

Hope
You believe that no matter how bad life gets, everything will turn out for the best in the end. Your hope isn’t just a rosy sunset on a Hallmark card; it’s a combination of optimism and realism. You are confident that your wishes and desires will be fulfilled. You are an upbeat person who turns negative feelings into positive thoughts. You have power to laugh in the darkest times and see humor even in the toughest situations.

Purpose
Purpose is the booster rocket of survival. You have a passion for life and your dreams. This gives you the power and drive to persevere in the face of incredible adversity. You’re determined and focused on accomplishing your objectives no matter what tries to slow you down. Life is a gift and you plan to make the most out of it. You are driven by a profound sense of duty to a cause and are willing to work tirelessly for your purpose.

Tenacity
Your tenacity is the superglue that keeps you strong in the toughest times. You are capable of holding on throughout any crisis and far out last others around you. You’ve got the persistence and determination to stick to it and keep stepping forward. You’ve got the grit and toughness to hold on when others can’t take the punishment. Sure life hurts everyone, but you can handle the pain and keep going.

Love
You will do anything and go to any lengths for the people you love. Your bonds with family and friends are unbreakable and give you reason to live. Other people depend on you, and you will never let them down. You believe that love is the ultimate purpose. Even in the worst times, the love around you and inside you gives you the strength to go on and thrive.

Empathy
In a crisis, your ability to help others turns out to be a very powerful way to help yourself. Your compassion motivates you to help other people stricken by misfortune. You will do anything to reduce their suffering. When others resort to selfish means of survival, you on the other hand think of others first. You are good at reading new situations and people, and you’re always aware of your surroundings.

Intelligence
You’ve got brains and a talent for learning, thinking and problem solving. Your intelligence is a powerful tool against adversity as well. You see complex and dangerous situations clearly. You examine problems from multiple angles to find realistic solutions. In a crisis, you can figure things out and understand what’s going to happen next.

Ingenuity
You are clever, inventive and resourceful. You can apply acquired knowledge from other situations to overcome immediate challenges. You are a real-life Angus MacGyver, the 1980s secret agent on television. You were given the gift of bricolage: the art of building things from whatever materials are available. You are an improviser and enjoy innovation and invention. Your ingenuity helps you survive adversity.

Flow
You are like a river. You move forward, steadily, relentlessly, and with apparent ease and effortlessness. You don’t need to make adjustments. You sail along, freely and calmly without fuss or muss. You stay cool when others panic and relax when others stress out. You understand the futility — and danger — of trying to control the uncontrollable. Facing a crisis, some fight and others flee, but you flow.

Instinct
You posses a remarkable gift that isn’t learned or taught. You have the innate power of instinct and intuition. You don’t need to think very hard — you don’t panic or obsess — you simply act. Your gut feelings come naturally and automatically and you trust yourself to do what’s necessary. In a crisis, you gain immediate insight into your challenge and know what to do. You see signs of danger before anyone else.

I posted this here because I agree with many of the points given, and it serves as good reminders to us, even if it does read like a daily horoscope out of a newspaper.

The more I read of their website, however, the more angry I became. It started with the phrase under Adaptability, which said, “More than any other psychological strength, adaptability determines who gets into the Survivors Club.”

Then I found a link for The Book. The Book is called “The Survivors Club” and the first thing you should always beware is when anyone offers you SECRETS that will better your life or save your life, if you pay them for their product or advice.

Next, the book is all about psychological profiling who will or will not be able to survive in the face of adversity. That’s right, folks, you heard me. This book will dictate whether or not you will FAIL to LIVE through your condition!

You purchase the book to get a ten-digit access code to go back to the website and take a personality test that will serve as self-fulfilling prophecy or psychological warfare, take your pick. Anyone knows that if you are told YOU WILL FAIL or YOU DON’T HAVE WHAT IT TAKES, that it has a horrible impact on one’s psyche. This is a dangerous and irresponsible book and I cannot for the life of me understand how the hell it got published.

This is not some sort of sorority or fraternity club! We are real people suffering every day with things that threaten to consume us at any second!

How I found out about The Survivor’s Club: The Endometriosis Research Center’s Facebook page had posted a link to a story about a woman diagnosed with endometriosis who, like me, started a blog to educate women about endo. On the same page as her article, there was a link to “12 Essential Traits That Make You a Survivor”.

Ill In A Day’s Work
When a woman is diagnosed with a chronic disease like cancer, MS, or lupus, she is often at the peak of her earning power and productivity. How do you choose between your livelihood and your life? MORE investigates.
By Donna Jackson Nakazawa
(Donna Jackson Nakazawa also writes a blog called Donna’s Blog and is the author of The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance — and the Cutting-Edge Science that Promises Hope).

Chronic Illness in the Workplace

In her bustling pediatric office in Severna Park, Maryland, Faith Hackett, MD, is explaining to a toddler’s young mother that she can’t reach down for the boy or give him a hug, even though he’s pulling at her for attention. “I’m sorry,” she says, steadying herself on the exam table for a moment, “but I just can’t pick him up.” Realizing that something has changed since their last visit, the mom jumps up and draws her 2-year-old back into her lap. Hackett looks drawn and tired. And she is limping slightly on her left leg.

What her little patients’ parents don’t know is that in January 2008, Hackett, 52, ruptured a disc in her lower back. During an MRI, doctors discovered that two other discs were also damaged, bulging from the wear and tear of bending over children for so many years. Since her diagnosis, the pain in Hackett’s back and leg — a result of the disc injuries — has worsened considerably. For months, Hackett has often been unable to sleep an hour at a stretch before the pain wakes her again. The effect on her work has been profound: She can’t pick up anything heavier than 10 pounds, about the size of an infant. “That means that all those yummy kids I would normally lift into my arms — I can’t hold them anymore,” she says. “Nor can I calm a struggling, unhappy child, and that’s been really hard for me.”

In her 22 years of practice, Hackett has been known to meet patients at her office at 11 p.m. or sit with a sick child’s parents at the hospital. But now, the slightest wrong turn to grab a stethoscope can have agonizing consequences; more than once she has had to head home and lie down on the floor, while her husband, who practices internal medicine, pulls on her leg to put traction on her spine. She has also cut back her work hours in order to spend more time seeing her own doctors and physical therapists. She says she never realized before “how much stamina I needed for the job I do and how much that stamina can be affected by pain and lack of sleep.” In many ways, Hackett took her capacity to work for granted — until she developed a chronic illness.

Sickness as Roadblock

Today, a growing number of midlife women face an array of chronic diseases that blindside their careers. Managing their health forces many of them to take pay cuts, scale back their aspirations, and give up socializing and networking. As a result, they face financial consequences that can be profound: The Journal of the National Cancer Institute recently reported that the typical working woman with breast cancer loses more than a quarter of her income in the 12 months following the start of her treatment. One in 10 female patients loses as much as two-thirds of her income as a result of missed work or reduced hours, and women are even more likely to suffer large wage losses if they live a significant distance from the medical center where they undergo treatment.

Women are especially susceptible to certain kinds of chronic illness. For instance, they are four times more likely than men to be diagnosed with an autoimmune disease, in which the body’s immune system, acting on misread signals, turns on itself. There are more than 80 such diseases, but women in their 40s and 50s are particularly vulnerable to Hashimoto’s thyroiditis, Sjogren’s syndrome, polymyalgia rheumatica, and rheumatoid arthritis, among others. Rates of many autoimmune diseases have doubled and tripled in recent decades.

But chronic illness takes myriad forms: There is back pain, which also increases in midlife, and which tends to be more common in women than in men. Nearly a third of women ages 45 to 64 suffer from low back pain (though certainly not all cases are as serious as Hackett’s). And there is arthritis, which affects roughly 12 million women from ages 40 to 60 — that’s more than 26 percent. Cancer has now also become a chronic disease for many Americans: About 200,000 women ages 40 to 59 suffer from some type of the disease, which is more than the number of afflicted men of the same age. Approximately 6 percent of women between 45 and 64 have heart disease, and is now the second leading cause of death for women in that age group. All told, nearly 133 million Americans — more of them women than men — suffer from a chronic health condition.

And I am one of them. In 2001 and again in 2005, I suffered paralysis brought on by Guillain-Barre syndrome, in which the myelin sheaths, which wrap like a protective insulation around the body’s nerves, are destroyed by the immune system. After each episode I had to labor for months to regain the use of my limbs. At one point after the second attack, four out of five doctors I visited informed me, gently, that I might never work again. The only exception was my own neurologist, who knew I had written several books and worked as a journalist and lecturer. “You’re a fighter,” he said. “You’re going to fight your way through this and get back to what you do. Whatever happens, don’t give up on your work.”

Over the next five months, I regained enough feeling in my legs to walk again, and in my hands to type again, which was almost as important to me. I began a study of chronic disease and spent the next three years interviewing women of all ages, professions, and stages of illness. And although I needed custom-made wrist braces to work at a computer, I wrote a book, The Autoimmune Epidemic, investigating the rising incidence of autoimmune disease; it was published in 2008. All told, these dual episodes of paralysis and physical rehabilitation (as well as bouts with three other autoimmune diseases) added up to 12 months of lost time in my early and mid 40s when I was unable to get out of bed.

Little by little, I managed to resume my career, mostly working from home. I learned how to pace myself, lecturing to a crowd of 1,000 people one day and spending the next two in bed. Even so, I rarely revealed to my editors, colleagues, and clients the physical challenges I faced every day. I didn’t want them to question, even unconsciously, whether I could still deliver the goods.

Faith Hackett was like me. When she first fell ill, she tried to continue her day-to-day work life as if nothing had changed. But as her condition worsened, “the way I looked sometimes worried people,” she says. “If I was having a painful spasm, I had to hold on to the examining table. I realized that they needed me to talk about it, to explain why I was acting the way I did.” Ironically, even as Hackett’s condition worsened, coworkers still had trouble registering how sick she truly was. “People don’t pick up that you’re in excruciating pain unless you tell them directly,” she says. “They may not understand that the reason you’re behaving differently is because you are in agony.” Often, the illnesses women face are largely invisible to casual observers, even those who know them fairly well. In fact, 96 percent of people who suffer from a chronic health problem live with an illness that has no surface manifestation — they don’t use a cane, wear a cast, or appear disfigured. They seem healthy enough and, as a result, others often expect more from them than is physically possible.

Even Hackett’s staff didn’t pick up on the severity of her illness until she called them into a meeting and said outright, “Look, if we keep booking so many patients, I’m going to collapse. Either we cut back right now or I won’t be here at all — I’ll be forced to have surgery and be out in recovery for weeks.”

Real Bias, Harsh Penalties

“A great deal of stigma is attached to chronic illness in the workplace,” says Stephanie Woolhandler, MD, codirector of the internal medicine fellowship program at Harvard Medical School. “The system isn’t very fair to anyone who is sick. But it is particularly unfair to women, who are more likely to suffer from chronic illness during the prime working years.” Women who are sick find themselves in a triple bind: unable to excel at their career because they are sick; unable to take good care of their health because they are working; unable to quit because they need the health insurance they can get only through a job. “If you have to quit working altogether, the options for health insurance are pretty dismal,” Woolhandler says. “You’ll be eligible for COBRA, but you’ll have to pay full premium out of your own pocket. Many people on COBRA incur huge debt and end up in bankruptcy. When COBRA runs out, you may qualify for Medicare. Or you may spend until you reach poverty level and get Medicaid. But if you have cancer, you cannot buy private insurance after COBRA runs out. No one will sell it to you.”

This makes the threat of losing a job all the more dire. Woolhandler treats many women who don’t want medical records released to their employer because they fear it will harm their career, or worse. “My experience is that when a woman feels paranoid about letting her employer know about her chronic illness,” she says, “there is usually a very good reason.”

Michelle Nofer, a 48-year-old lawyer in Philadelphia, agrees emphatically. As a specialist in employment issues, she spent much of her career telling colleagues, “You have to let people take time off when they are ill, you can’t give them less of a raise, and you must never let an employee’s illness color how you view them.” Yet up until very recently — when she announced she was taking an extended leave of absence — Nofer chose not to tell her own office about the life-threatening health condition she’d been facing for eight years.

In October 2000, just before her 40th birthday, Nofer, who for months had experienced severe fatigue, unremitting pain, and swelling in her legs so severe she could barely shuffle across a room, was diagnosed with a serious autoimmune disease known as IgA nephropathy. (This occurs when IgA — a protein that helps fight infections — settles in the kidneys and begins to attack the organs themselves.) Several months later, she was diagnosed with an autoimmune-related disease, fibromyalgia, a disorder that causes severe muscle pain and fatigue. Although today the IgA nephropathy is stable, for years Nofer required a combination of drugs to keep the disease at bay (about a quarter of adults with IgA nephropathy develop total kidney failure). And even now, because of the fibromyalgia, she has days when her only choice is to “either become a zombie on pain medication or go to bed for the day.”

At the office, Nofer confided her situation to only a few trusted people, including her boss, with whom she had a close relationship. She felt she owed her the truth, that given the highly demanding nature of the job, Nofer would never have been able to explain away a pattern of sudden absences, unanswered phone calls, and work-at-home days. When she was ill or at medical appointments, the secretary fielded phone calls. She and the boss kept Nofer’s “wellness cover,” helping her check that nothing fell through the cracks. Nofer’s hundreds of colleagues “assumed that I just kept catching every virus and flu possible,” she says. “People had no idea I’d been dealing with a very crippling illness and years of constant flare-ups.”

Workers suffering from chronic illness also face a less obvious professional disadvantage: They need to cut down on their networking, putting in less after-hours face time at the office, and hosting fewer client dinners than their colleagues. “After I developed two chronic diseases, I just wasn’t able to go to the social and trade events anymore,” Nofer says. “I couldn’t stay on the national scene. People suddenly saw me as not participating as much as everyone else, and yet they had no idea why.”

Why did Nofer go to such great lengths to keep her illness a secret? “When you work in employment law, you know that discrimination against sick people is very real,” she says. “We tend to suspect that when someone gets sick they must be weaker than we are in some way, that they must have done something wrong. I think we do that to differentiate ourselves from them; it’s our way of telling ourselves, this could never happen to me.” Nofer says she sees this kind of prejudice in the business world every day. “It’s kind of like the mommy track,” she points out. “We like to say we don’t view the career potential of women differently if they are juggling work with raising kids, but we do. Well, the mommy track is in the same league as the sick track.”

And yet Nofer is speaking openly about her illness now — partly as a result of being interviewed several times for this article. “I really heard my own story for the first time,” she says. “It rang out loud and clear how crazy it was to be working around the clock while pretending I wasn’t ill — then secretly recuperating at home, tapping away on my BlackBerry. The more I talked about how I try to cope, the more I realized I’m not coping.” As she started to see the bigger picture, the pattern of her life emerged. “It suddenly seemed absurd that I have never really tried to halfway take care of myself,” she says. “I realized that if I want to stay alive for my two sons, I had to break the pattern.” Indeed, she sees her recent decisions — first to come clean with colleagues, then to take a leave of absence, and finally, just this fall, to step down altogether — “as long overdue first steps to taking care of me.”

Creative Coping

For women with chronic illness, career-tending requires a high level of inventive strategizing, scripting, and maneuvering, and every woman I talked to has developed her own techniques. Claire Ganz was 42 in November 2006 when she was diagnosed with Guillain-Barre syndrome. At the time, she was running two small businesses from her home in Santa Fe, New Mexico: Bringing Dreams into Play, which advises small companies on how to market their products, and Martha’s Vineyard Totes, which sold beach bags. When Ganz was diagnosed, she had been working for nine years building her businesses. “I felt I was on my way,” she says. But she had to put both aside to spend a month in the hospital, receiving intravenous treatments of other people’s healthy immune system proteins. She came home in a wheelchair, unable to walk, only to discover that she had lost many of her clients.

Now, more than two years later, Ganz is walking again, though always with difficulty, and she has rebuilt her client base. But her outlook on work has been forever changed. “When you run your own business, you’re not just selling your services to clients, you are selling yourself,” she says. “And when a client sees you have trouble getting across the room, relationships can suddenly go cold.” When clients meet Ganz for the first time in a conference room, “My disability is obvious,” she says. “I can’t get up out of a chair without crutches.” Ganz’s strategy has been to have a script that she follows when someone inquires; it helps her to feel she is in control of what people know. “If people ask, I simply tell them, ‘I fell ill with an autoimmune disorder and I’m getting better,'” she says. “What I mean by that is: Even though I may not be getting better physically, I’m getting better at living with what I have.”

Michelle Nofer gets support and practical advice from several interactive health Web sites that combine information with online peer support. The Department of Labor’s Job Accommodation Network (jan.wvu.edu) offers concrete suggestions about how employers and employees can accommodate the specific demands of dozens of illness. Nofer says she has also found comfort at keepworkinggirlfriend.com, which addresses the professional issues of women with chronic illness. (Another good resource is cancerandcareers.org.)

All the women I interviewed rely heavily on technology. “In the age of the BlackBerry and the computer, you can be home in bed and no one knows,” Nofer says. “For years, that’s how I got through.” Hackett answers e-mail from home at night. “I prefer talking to parents face-to-face,” she says, “but I can’t. So I go home and write to them one at a time.” Ganz keeps her computer plugged in next to her bed and logs on before she tries to get up. “My legs don’t work so well in the morning, so before I stand up I need to do 45 minutes of exercises to wake up my legs and feet so that they can hold me,” she confides. While exercising, she’s also online, answering e-mails. “Working while I move on my legs keeps me from getting down about my situation,” she says. “I need to be connected to the world.”

Ganz also uses creative strategies to compensate for the effect she fears her crutches may have on clients. “I make sure that I have beautiful over-the-shoulder accessories — purse, laptop case — so that I don’t have to struggle to carry anything when I enter a client’s office,” she says. And she’s much more careful about which clients she accepts. Ganz says she has had to “let go of the pleaser aspect of who I am. I don’t say yes to anything I don’t really want to do. It’s a hidden blessing to learn to let that go.”

Passion Plays a Part

For many years, Linda Johnson, 60, served in a senior management position at a local Washington, D.C., bank. She was working there in December 1993, when, at age 45, she was diagnosed with breast cancer. Johnson had one mastectomy in 1994 and a second in 1996, and continued working throughout her treatment. Then her mother died of breast cancer. “When that happened, I realized there were things I wanted to do in life that I hadn’t done yet,” she says. Around the same time, the bank where she worked announced a merger. “People would have to be laid off,” she says. “It was going to be incredibly stressful, and I didn’t want to be the one to deal with it.” She had always gotten health insurance through her husband, so she quit. “It was a huge decision,” she says. “But one I knew I had to make.”

Johnson started to do some pro bono work. Two years later, she got a call from a good friend who asked if she would help out a nonprofit that needed an executive consultant. The helping out turned into a full-time position, and until June 2008, Johnson served as head of human resources for AABB (formerly the American Association of Blood Banks), the nonprofit which represents most of the nation’s blood banks. “Because I started as a freelance consultant rather than as an employee,” she says, “I was able to be very open and up-front about needing time to deal with my health.” AABB told Johnson that if she came to work for them full time, she could telecommute whenever necessary.

In 2005, at 57, the breast cancer metastasized into her bones. So Johnson started telecommuting two or three times a month from a chemo infusion room, her laptop on her knees. “I have a number of people in the office I’m very close to,” Johnson says. “They ask very nicely, without prying, how they can help. They know that I come in later in the day because early morning is when I have the most trouble with nausea from the chemo. They know that I keep a body-length cushion by my desk and if I’m really tired at lunchtime, I just unroll it and lie down right there on the floor. I don’t ever want to have to try to hide any of that.” Studies show that having a high degree of social support and empathy from others is critical in helping patients maintain a positive attitude when suffering from a chronic disease. Johnson smiles when I tell her about one woman I interviewed who has lupus and whose colleagues have been known to roll her in her desk chair all the way to the conference room when she’s having a tough day. “It isn’t what you want — to have your colleagues see you that way,” she says. “But it’s so good to know that you don’t have to hide what’s happening to you and that they’ll support you in whatever state you are in.”

In the midst of balancing a chronic illness with a career, many women — myself included — discover just how passionate they are about their work. Quite often, it is a combination of desire and well-honed personal strategies that allow us to keep doing the work we love while trying to stay as healthy as we can. “Wanting to help others is a huge part of who I am in my work,” Ganz says. “I love getting up every day and helping people give new life to the product they’ve created. And I have no plans to give that up.” For her part, Linda Johnson feels that her illness was an opening to another way of life. “For a long time, I was able to balance my job of taking care of myself with a career I loved,” she says. “I don’t want to sound too mushy, but I found my calling.” Faith Hackett feels the same way. “I have a job I love,” she says. “Just knowing how much a toddler wants to give me a hug — how can that not make me smile every day?”

What Are Your Legal Rights at Work If You Get Sick?

Two federal laws address this question for employees of private companies. The first is the 1993 Family and Medical Leave Act, which grants seriously ill employees up to 12 weeks unpaid leave in a 12-month period. You can take the time off all at once, in shorter blocks or in increments as small as 15 minutes. So someone who needs to recover from a series of surgeries could take a week every few months to recover, or a person with mental illness could leave early on Wednesdays to see her therapist.

The other law that protects the rights of the chronically ill is the 1990 Americans with Disabilities Act. In general, it states that an employer has to make “reasonable accommodations” to workplace rules to allow a disabled individual to perform her “essential job function.” The catch is that a chronically ill employee doesn’t automatically qualify for coverage; she has to prove she has an impairment that adversely affects more than one everyday activity, like walking. A January 2009 amendment to the ADA will help an employee make her case by mandating that the limitations of a person with chronic illness be determined by looking at her condition when it’s active, not in remission.

If You Are the Manager

If a sick employee asks you to discuss ways to make her job more doable, you — or another representative of the company — are required by law to have the conversation. There is no federal paperwork to file, but the hope is that you and she can arrive at a compromise to help you both do your jobs more efficiently. Here are some guidelines to help you along the way.

Negotiate Terms
According to the Americans with Disabilities Act, you should not have to make any arrangements that will place “undue hardship” on your business. So if you run a software company and a diabetic employee asks to schedule a regular break to check her insulin level, that is probably reasonable. But if you own an ad agency and one of your staff says she can’t attend morning sales pitches because she has Crohn’s disease and often wakes up with an upset stomach, you may want to suggest an alternative solution (maybe she sets her alarm earlier so she has more time to recover).

If she disputes one of your suggestions on medical grounds or you want a physician to weigh in, you can legally arrange for an outside consultation. Likewise, you have the right to review an employee’s medical records (but only those that pertain to her disability claim). You can also enlist the help of an outside mediator, such as the Job Accommodation Network (jan.wvu.edu), which provides arbitration free of charge.

Talk to Her Often
Your employee needs to know she can tell you if she’s unable to finish a project without worrying she’ll be fired. And you need to know that you won’t be blindsided by late reports. Try scheduling regular meetings to discuss whether your arrangement is working. If it’s not, you can always renegotiate the deal. If you are meeting your employee’s expectations, you can and should hold her to the same performance standards as a healthy staff member. “Many managers think, I can’t ask her to do anything else because she’s sick,” says Roslyn Stone, CEO of Corporate Wellness, a health services company in Mount Kisco, New York. In fact, you should not lower your expectations of an ill employee or shy away from constructively criticizing her performance. “The biggest mistake managers make,” Stone says, “is thinking they can’t commence disciplinary action with an employee who has a chronic medical condition.”

If She Requests a Medical Leave
First know you’re entitled to 30 days’ notice (unless the leave was unforeseeable), medical proof supporting her need for time off, and a second or third medical opinion if you want it. Once the leave is in effect, you can legally request periodic reports on her status (without asking for personal or private information) and her intent to return to work.
— Patti Greco

How Do You Get Through the Day?

“I have scleroderma and rheumatoid arthritis. I wear a pendant that says EVERY DAY MATTERS, and whenever I touch it I am reminded of life’s meaning, my meaning.”
— Tori Anderson, 49, radio personality in Hancock, Maryland

“I used to say yes to everything, but now that I’m ill [with Hashimoto’s thyroiditis] I let younger and healthier coworkers say the extra yes — it’s their turn now. But when a client asks, ‘How are you?’ I always say, ‘Excellent!’ even if I feel poorly. When I do that, I feel better. Sometimes when I’m preparing to meet a client, I say to myself, showtime!”
— Enid Fox, 55, nutrition consultant, Sunnyvale, California

“I’ve deliberately kept my commute as short as possible because with my condition [fibromyalgia, arthritis, and irritable bowel syndrome], I just can’t get run down. And I work ahead whenever I can. Procrastination causes stress I don’t need. Whenever I’m making decisions, I always remember KISS: Keep It Simple, Stupid.”
— Janet Kirk-Greenblatt, 41, music teacher, Easton, Pennsylvania

“It’s hard for me to see my girlfriends running on normal energy and going out to movies, restaurants, and celebrations on top of a 40-hour work week, knowing that, as a lupus patient, I can’t. But I try to respect that taking care of work and home are all that I have the energy for. I also don’t carry a company cell phone, so when I’m off, I’m off.”
— Joan “Connie” Dubbs, 56, office manager, Oceanside, California

Originally published in MORE magazine, February 2009.

Donna Jackson Nakazawa also writes a blog called Donna’s Blog and is the author of The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance — and the Cutting-Edge Science that Promises Hope.

I heard this on National Public Radio on the way home from work today and I have to share it with you.

The Notepad
Wed, Feb 18, 2009 — 7:37 AM
Evan Sagerman’s wife was seriously ill, but doctors couldn’t — or wouldn’t — help her.

In the small examination room, my wife sat on the table, furiously taking notes.

The doctor looked at my wife’s notebook. The doctor said that when she sees a notebook like that, she knows she’s dealing with a neurotic patient – the kind of patient who reads too much on the Internet.

The doctor then talked to my wife about her illness, pausing now and again to allow my wife’s note-taking to catch up.
I appreciated the doctor’s polite pauses but, this was the wrong doctor. This doctor saw my wife in her notebook, but she had no idea what she was looking at.

My wife’s health began to fail when she was in her early twenties. Over a period of five years, she went from doctor to doctor, and from diagnosis to diagnosis. She was told that she had allergies, that she had autoimmune disease, that she was normal, that she should be on steroids, that it was all in her head.

Meanwhile, she steadily grew worse.

Having an undiagnosed chronic illness is like being perched on top of Mt. Everest – you’re still on the planet, but you’re not well-moored. The air doesn’t have enough oxygen in it – you know you have to get back down to a lower elevation if you want to stay alive. Only you don’t know how.

Her notebook is where my wife recorded everything; seemingly unrelated symptoms, meetings with doctors, therapies and medications tried.

What ice axes and crampons, down jackets and ropes are to climbers, that notebook was to my wife. It was the tool for her descent back to safety, if she was going to descend at all.

Refusing to give up, my wife met with yet another doctor. She consulted her notebook as she gave her long medical history.

This doctor listened carefully to her lists of strange symptoms, test results and therapies tried.

When she was done, he said he knew what was wrong with her. He said he could help. And he did.

It’s taken years for my wife to slowly climb down from her airless peak, but she has.

A climb she accomplished, clutching her notebook.

With a perspective, I’m Evan Sagerman.

The agony of endometriosis
Chronic pelvic pain not easy to diagnose
By Jessica Yadegaran
Contra Costa Times
Posted: 02/17/2009 01:00:00 AM PST
Updated: 02/17/2009 07:24:09 AM PST

Brie-Anne Paterson has suffered from chronic pelvic pain for more than half her life. She was the girl in gym class curled up on the locker room floor, crying and clutching her abdomen.
“I would just die the week of my period,” says Paterson, who grew up in Livermore and now lives in Tracy. “I’d be curled up in a ball and couldn’t get out of bed for a week.”
Paterson, 26, is one of approximately 5.5 million North American women suffering from endometriosis, a painful and puzzling reproductive disease that has no known cause or cure. Endometriosis is near impossible to diagnose without surgery because the symptoms — pelvic pain, difficult menstrual cycles and bowel problems — are common and lead to misdiagnoses. Even though Paterson had the disease from the age of 12, it took years of trial and error with seven doctors, including one who advised a hysterectomy at 22, to get effective treatment.
But that may be changing as sufferers tell their stories on the Web and the medical community responds with specialized outlets such as Kaiser Permanente’s Center for Pelvic Pain, which recently opened in Martinez. Also, the disease received national attention late last year when two professionals on the TV show “Dancing With the Stars” told millions of viewers that they suffer from endometriosis.
The disease occurs when endometrial tissue like that which lines the uterus is found outside the uterus and in other parts of the pelvic cavity and body. This misplaced tissue develops into growths that respond to the menstrual cycle in the same way that the tissue of the uterine lining does: Each month it builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving. This results in internal bleeding and inflammation. In addition to inducing chronic pain, endometriosis can cause scar tissue, adhesions and infertility. Still, some women have no symptoms at all. A diagnostic laparoscopy, or surgery, is needed to locate the endometriosis, and, eventually to remove it.

High recurrence rate

Unfortunately, that is not a cure. Endometrial tissue has a 50 percent recurrence rate, according to Andrew Cook, a Los Gatos surgeon and reproductive endocrinologist who specializes in pelvic pain disorders. “How well the disease is removed has a lot to do with that rate of reoccurrence,” says Cook, adding that he prefers cutting the tissue out over burning it, which is more common. The surgery is technical and very difficult. “This is worse than cancer from an operative perspective,” he says. “Endometrial tissue obliterates everything around it.”
Still, early detection is possible. Endometriosis is most likely genetic, and stress and a decreased immune system can make women more susceptible to the disease, says Jean Kayser, director of gynecology in the Department of Women’s Health at Kaiser Walnut Creek.
Two theories persist on the cause. The retrograde menstruation theory suggests that during menstruation some of the menstrual tissue backs up through the fallopian tubes, implants in the abdomen, and grows. Another theory suggests that endometrial tissue is distributed from the uterus to other parts of the body through the blood or lymph systems, Kayser says.
There’s nothing that can be done to prevent endometriosis. Women who have symptoms can try to control the disease by having fewer periods, Kayser says, and that means rigorous and prolonged use of birth control pills or even Lupron, an injectable drug that stops the body’s production of certain hormones and puts women into early menopause. Cook, the surgeon, isn’t a fan of the latter. At the VitalCare Health Institute, where he treats women from 45 states and 10 countries, he favors comprehensive health care — adjusting diet and lifestyle — over treating women with drugs such as Lupron. “If I really did my job as a surgeon, there’s nothing to treat,” he says.
Paterson reduced her periods, and saw results. But her relief was temporary. She was diagnosed in 2005 and put on continuous oral contraceptives. When her pain returned, she was put on Lupron. Still, Paterson’s chronic pain continued. Finally, in 2006, she had a diagnostic laparoscopy. Endometrial tissue was found on her left kidney, bladder, colon and rectum.
“It was pretty advanced,” Paterson says. “It looked like black coffee grounds all over your organs.” She had surgery to remove everything. With weekly pelvic floor physical therapy, she lives a mostly pain-free life. And, last March, she gave birth to her first child, Scott. “He’s my miracle baby,” Paterson says. “If you’re having trouble coping with endometriosis, don’t turn inward. Talk to somebody. I was horribly depressed. I wasn’t working. I wasn’t seeing my friends.”

Family connection

Jessica Brooks of Concord had a similar experience. The 28-year-old teacher was diagnosed with endometriosis at 19. Her maternal aunt and paternal cousin both had it, and miscarried. A year later, Brooks was approved for surgery. Surgeons discovered endometrial tissue growing all over her pelvic cavity, from her ovaries and bladder to her lower intestine and pelvic wall. “I’ve had a lot of digestive issues and bladder control issues,” says Brooks, adding that her endometriosis becomes aggravated whenever she is sick. “Fortunately I’m a middle school teacher and have a three-minute break every 45 minutes. ”
Even after surgery, the endometriosis returned. To control it, Brooks had several rounds of monthly Lupron injections, which gave her severe mood swings. She also tried birth control pills. But she still suffers. These days, she has vaginal ultrasounds every time she visits her doctor to make sure the endometrial mass all over her pelvic cavity isn’t growing or spreading. The option for a second surgery is there, but Paterson is reluctant. More surgery means more scar tissue. And, she and her boyfriend of 10 years hope to have children one day. Yet they don’t want to feel rushed because of this disease.
“It’s a struggle,” she says. “I have nightmares about never being able to have children.”
Gabrielle Klein suffered through 14 years of heavy periods and debilitating abdominal pain. During that time, she saw four doctors who diagnosed Klein, now 33 and living in San Francisco, with gastrointestinal disorders including irritable bowel syndrome and candida, a yeast infection of the gut.

Tracking the pain

But Klein still had pain. And she knew better. A friend suggested she track her pain according to the lunar calendar. “After a few months I was able to prove that it was coming in a cyclic fashion a week before my period to midway through it,” she says. She turned to the Web, and read about her symptoms on the Endometriosis Resource Center site. After 2½ years of trial and error, Klein walked into a doctor’s office at Stanford and said, “I’ve done my research and I think I have endometriosis.”
She was right, and the doctor performed a laparoscopy. Because she didn’t want to cause damage, however, the surgeon left what she called negligible amounts of the tissue on Klein’s urinary tract. The doctor put Klein on hormonal treatment to keep the tissue from regrowing. But, for the next two years, she continued to have severe pain for up to 14 days out of the month.
Finally, at an ERC support group in 2003, Klein met Cook and asked him to review her chart. He suggested a second surgery to remove the remaining endometriosis. Cook found the tissue covering the outside of Klein’s uterus, ovaries and fallopian tube. It was on her spleen, gall bladder and growing on the outside of her bowels. Klein was in the early stages of appendicitis because the endometrial tissue was wrapping around her appendix. He removed everything. And Klein has been pain-free since.
“It’s been a really long road, but I’ve been going in the right direction for a long time now,” she says. Early education is vital, Klein says, because women don’t really share experiences with their cycles and reproductive systems.
“It’s something we keep close to the vest,” she says. “But if you’re popping six Advil a day and it’s not cutting it, there might be something else wrong.” These days, Klein feels little twinges of pain a few hours after she begins menstruating. That’s it, she says, almost surprised. “It’s been incredible for me to get my period and not know it’s coming. It’s a joy to have it just show up on me.”

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Reach Jessica Yadegaran at 925-943-8155 or jyadegaran@bayareanewsgroup.com.

Resources

• Endometriosis Association. This membership-based nonprofit organization is the oldest independent self-help organization about endometriosis. It has a network of chapters and support groups in 66 countries; funds international research on the disease; and has published two books, “Overcoming Endometriosis” and “The Endometriosis Sourcebook.” Visit www.endometriosisassn.org.
• Endometriosis Research Center. The ERC launched in 1997 and is a free resource for women with endometriosis and their loved ones. Upcoming support groups are Wednesday and March 25 at the Noe Valley Public Library, 451 Jersey St., San Francisco. To get more information about the meetings, send an e-mail to questions@sfendo.org. Visit www.endocenter.org. or www.sfendo.org for more information.
• VitalCare Institute of Health. Andrew Cook is a Los Gatos reproductive endocrinologist and surgeon who specializes in pelvic pain disorders. In 1996, he launched Pelvicpain.com, a support network for women suffering from these disorders. www.vitalhealth.com.
• Pelvic Pain Center. Kaiser Permanente patients can take advantage of this new, multidisciplinary facility with a referral from their primary care physician. 200 Muir Road, Martinez.

— Jessica Yadegaran