Endometriosis and "Why Don't You Just...?"
reader diary by frolicnaked
February 20, 2010 - 2:52am (Print)
Today, a close friend asked me how I was feeling, to which I said, "It's bad enough to need the Percocet today."
I suppose her response shouldn't have shocked me, but it did. "How can you work when you're on those drugs?"
From there, I made the mistake of: a) continuing the conversation, and b) saying what I actually thought. "Isn't the better question, 'How do you work with debilitating pain?'" Because while I lament that I'm not
necessarily more functional on narcotics than in 10+ pain, I know damn well that I'm not less. And you know, a lot of people I know don't seem to register that, but they're quite happy to share their opinions about what they think I shouldn't be doing.
Which apparently left me open for The Question. Getting asked -- and defending against what I consider nosy asking -- various incarnations of, "Why don't you just...?" might be one of my least favorite aspects
of chronic pain and the MenstroMonster. (Feeling guilty for canceling obligations at the last minute and puking on my shoes are also high rankers, though. I've ruined a lot of shoes that way.)
You know them, right? Questions like, Why don't you just...
-- take a Tylenol/Motrin/Aleve/Midol/other OTC product, etc.?
-- go on birth control?
-- switch to birth control Brand XYZ? It was the best thing ever for me!
-- use cramp bark/raspberry leaf tea/black haw/vitex/other herbal product, etc.?
-- exercise?
-- exercise: specifically, take up yoga?
-- take a hot bath?
-- take a nap?
-- take a multivitamin?
-- switch to pads?
-- switch to tampons?
-- switch to cloth pads?
-- switch to a menstrual cup?
-- cut out red meat/dairy/soy/wheat gluten/caffeine/sugar/alcohol/carbs/etc. from your diet?
-- drink more (alcohol)?
-- smoke pot?
-- get a massage?
-- go to acupuncture?
-- call in sick?
-- stop having sex?
-- stop having periods?
-- have an orgasm?
-- have a hysterectomy?
-- have a baby?
-- have some chocolate?
-- make your doctor do something that works for you?
-- quit complaining and get on with your life?
I certainly don't mean to belittle any of these as choices. If they're something a given individual wants to try, then of course that should be respected. Rather, I'm peeved by the "why don't you just" framing as a way to... I don't know... substitute their judgment for that of the
person who's actually living with the condition.
Because I see a couple of problematic assumptions embedded in the, "why don't you just" phrasing. First, the idea that the suggestion is something the person hasn't already tried. I mean, I've been menstruating for better than half my life at this point, and it's been cyclically excruciatingly painful since menarche. I haven't exactly been sitting around on my arse all this time waiting for a solution to fall into my ovaries lap. I'm open to the idea that there are possibilities I haven't tried (or even considered), but the most folks suggest to me, often when I'm not really looking for advice, are not new.
Moreover, there's sort of the implication that Suggestion Eleventy Billion Plus One is an easy one to try -- and by extension, that it's one that should have been tried already. Um, "just" have a hysterectomy? "Just" have a baby? I may do both at some point, but I'm going to make damn sure each is what I want first. Granted, those are probably the most extreme examples, but I'm also not into "just" smoking pot or quot;just" not having sex, either, you know?
Finally, the "why don't you just" suggestions always seem to come with the undertone that this is the Magic Solution, and if it doesn't work, that must be because UR DOIN IT RONG. Assuming that's true -- and even though I know it's not, when so many people over so many years seem to
unconsciously come at it from this angle, the effects add up -- want to guess how much I must have DUN RONG when it comes to my health and my quality of life? Sometimes fighting against it is angering and frustrating... and not fighting is depressing.
I will admit, though, that by the end of the conversation with my friend, I was neither angry, frustrated (okay, well, a little), or depressed. Because when she said, "Why don't you just use the little stick-on pad heat things?" I burst out laughing. Oops. :P
I cannot agree with you more! I'd say you're doing it right! I've had the same problem for 27 years (had major complications with my endo). I guess since people can't "see" a problem then they think there really isn't one...that it's all in my head.
Oh how I've wished that I could switch bodies with a person for just 1 minute so they could feel for themselves before they dropped another "Why don't you just" line!
The other famous line is "Are you sure you aren't...."
just having a bad day?
just having bad cramps?
blowing it out of proportion?
you know the drill.... good luck to you!
In part because I was so exhausted by hearing exactly the things you have, ad nauseam (plus the CONSTANT suspicion that you're somehow faking it all), I did have the hysterectomy.
Guess what? It really didn't solve diddly. Now I'm still in pain and with hot flashes, minus a major organ. Although now people tell me it's a phantom pain. Ha!
You're lucky you have a doctor who believes you, as well; in my experience, because it's something they can't SEE, most doctors are reluctant to prescribe anything stronger than an 800 mg ibuprofen (that's just taking 4 Advil at a time, for those of you new to the pain game).
So all I can say is, try to look on the bright side. You have a good sense of humor about it, and you know what you want. Keep fighting for it.
Mine's actually an option on the table to control the heavy bleeding likely caused by the adenomyosis I also have. Given the locations of my endometrial overgrowths, it's very possible that even a hysterectomy with oophorectomy won't help. But it would be kind of nice not to have to worry about my hemoglobin levels with every ounce of menstrual fluid that leaves me.
rather than listen to some ppl's lame-brained comments, and these coming from Doctors and female friends. "You can work through this"; "Try giving birth, then you will know what pain is"; "It's all in your head"; "Why don't you become an exercise junkie?"; are some of the idiotic things I've been told, along with the comments that Frolicnaked already mentioned.
After 5 years of suffering from debilitating loin/groin pain, frequent U.T.I.s and every other symptom of Endometriosis that I've read about, I finally found a Doctor who gave me a proper diagnosis and I am now waiting to have surgery (Laparoscopy and Conservative Treatment For Endometriosis).
What I want to know is: What's with all the ignorance surrounding this condition? I'm sure lots of women suffer from Endometriosis, yet it takes forever to get a diagnosis and treatment for it. That's IF someone believes you, that is! p.s., sorry for the Rant/Grumpiness.
I've got to tell you, after many years of experience, that when people say 'How are you?' the only answer they are willing to tolerate is 'Fine'. Nobody except a fellow sufferer really wants to hear the details of someone else's medical problems, which is why there are support groups.
I was diagnosed with endo at 19, and my personal take is that the ignorance surrounding this condition has its roots in the global ignorance about most complications of reproduction -- it's 'icky woman stuff' and women are just supposed to suffer it in silence so it doesn't creep anybody out.
My experience with physicians was that there was also a strong component of 'if your reproductive organs aren't working right, it must be your own fault' because their presumption was that the system was troublefree and problems must be 'operator error' conditions like 'not accepting one's feminity' or 'having an unwarranted fear of childbearing'.
Thank you Crowepps for sharing your insight. I really should be attending a support group and hope I can find one here in Regina SK.
You hit the nail on the head when you said that ppl don't want to hear about this icky woman stuff; of course I don't tell just anybody, only when a friend/family member asks me "why are you limping/groaning/crying", etc. Even then, it's like why do I bother telling them the reason behind my misery. The fact that my surgery has been cancelled twice in a row I guess is adding to my misery.
As for physicians, I have gone through the same thing. One Gyn. told me "You are a woman, what do you expect?", when I told him about my symptoms. I found out later through some of his (disgusted) former patients that he lets his religious beliefs interfere with his giving humane care. Like I'm supposed to have babies til I die? Another doc told me, and actually wrote on my disability form that I had Psychosymatic Illness! Thank goodness I didn't give up and kept looking for answers.
Take care, M.
Aside from moral panic regarding narcotic use, what irritates me most is comments I get regarding the pill, mostly from other women. I take the pill continuously, with one-two breaks a year. I've heard so many times that this 'isn't natural' and must be doing me some kind of harm and that it's 'ridiculous' to avoid periods, and so forth. Like, fuck you very much, this is what I've been advised to do by around four or five separate gynaecologists, one of whom is like, the king of endo treatment in my city.
Even worse are the in-touch-with-nature types who carry on about how menstrual pain is all culturally mediated, anyway ('it's all in your head!'); and if you're on the pill you're not in touch with your womanhood, and so on and so forth.
I have another chronic pain condition, and it's much the same with the 'why don't you exercise/do yoga/do an elimination diet/exercise/meditate/exercise (exercise is a favourite), etc' thing, but there seems to be an extra layer of...hate to use the word, but hysteria when the female reproductive system is involved.
And the anti-contraception people can prise the pill from my cold, dead hands.
