Invisible Illness Backtracking

And cross posting, as this originally appeared on my Tumblr.

Mauriceau parts of a woman

22. My illness has taught me:

  1. That there have been basically no new advances in endometriosis management in the last 10 years.
  2. That we still have a long way to go in separating a woman’s quality of life from her baby-making potential. (To be fair, the ability to have biological children is a huge factor for some women. For others, though, it’s somewhat or very much less important than day-to-day living quality.)
  3. That a lot of people (presumably without chronic pain) don’t understand what “chronic pain” actually means.
  4. That there is all kind of judgment against people who take pain medications regularly, particularly when those medications aren’t societally approved (e.g., marijuana) or have the potential to become physically addictive (e.g., narcotics). Moreover, that a number of folk are willing to concern troll about what “might” happen to you as a side effect of a given medication without understanding the certainty of the pain you will face without it.
  5. That everyone and their cousin has a Magic Fucking Solution for endo… except, you know, when you’ve tried that. Twice.

I’m not sure which of those frustrates me the most. (Personally, it varies depending on day and context.) Discuss.

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Posted in MenstroMonster, non-asana, swadyaya
4 comments on “Invisible Illness Backtracking
  1. My favorite is when doctors hear how much Tylenol/ibuprofen I take- they always frown and say, “You know, you’ll do damage to yourself with that much painkiller..” Impolite me goes, “YA THINK?! Can I have some narcotics please?”

    But in real life I just say, “Yup, I’m well aware, but I’m not working with a lot of options…”

    • Tori says:

      I hate that catch-22. With a lot of my former providers (who are former for a reason), they’ve been:

      1. Concerned with the amounts of OTC pain meds I take on account of possibilities like stomach bleeding or liver damage (which, yes, I understand are real).
      2. Reluctant to prescribe anything but prescription doses of the same OTC meds (and hormonal contraceptives, which don’t function as pain management for me) I’m already taking — for fear that I’ll become addicted and harm myself that way.

      What makes me angriest about that is that — while both #1 and #2 are valid points to take into consideration — there’s so seldom discussion of the ways chronic pain is already harming me.

  2. Shauna says:

    3. That a lot of people (presumably without chronic pain) don’t understand what “chronic pain” actually means.

    There’s a reason that I’m one of the few people whose pain my mother doesn’t dismiss out of hand–we both have chronic pain conditions (different ones), and she knows that unlike Friend A who has a temporary back pain and called to complain about it, mine won’t go away anytime soon.

    I, on the other hand, am not that fed up yet. But I had to play a pity card today to get a professor to stop telling me, “well, your problem is that you don’t have a physical copy of the book like I told everyone to get.” –Well, yeah, that’s A problem. But the bigger problem is that I’ve been in so much pain lately I can’t get my work done, and that is primarily why I’ve fallen 100s of pages behind in the reading. I don’t think that occurred to her until I started crying.

    Thing is, I have a narcotic, that was prescribed almost a year ago, for a specific (temporary) thing, and I’m reluctant to use it to lessen the pain because 1) I don’t want to depend on it, and 2) it makes my brain go fuzzy.

    …perhaps I should look into getting a new prescription, since the anti-inflammatory I’m on clearly isn’t enough. I would add ibuprofen to that, but I’m already on an antacid because SOMETHING was making me sick every 2-3 weeks for about four months until my PCP put me on a strong antacid (even though I didn’t really want it).

    [/mini-rant. Apparently your words brought some issues to mind.]

    • Tori says:

      I have the same concerns about narcotics. — particularly the second one. I’m to the point where I won’t use certain types of narcotics at all (because the negative of the side effects often overshadow the positives of pain management, and that’s saying something) and when I do use one, I cut a pill into fourths and take it 1/4 at a time, hoping I can find the minimum dose that keeps the pain at manageable levels.

      Because while I prefer “unproductive because of opiates” to “unproductive due to pain,” I’d really prefer that nothing be interfering with how my brain and body function.

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