What NOT To Say To A Woman With Endometriosis

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.

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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

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* 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.