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.
PS:
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.