So it’s Week 4 of Blogging for Endometriosis Awareness.
First, I would like to say that it’s about time spell checkers start recognizing endometriosis. I have seriously added it to my browser’s dictionary at least a dozen times; it keeps “forgetting.”
Second, the prompt for the week looks like this:
Your favorite things/tips/coping tools that have helped you stay encouraged in spite of illness (suggestions: endo survival kit, advice for newly diagnosed, top 10 most annoying things you can say to someone with endo, etc)
As it happens, one of my favorite coping tools is verbal venting. And that “annoying things you can say to someone with endo” thing? That sounds great. Only I’m going to change it to “annoying assumptions” you can make.
Note: I’m going to phrase this as a “you/me” thing because:
- Different people with endo have different assumptions made and find different assumptions aggravating. Though we may have points in common, I don’t intend to speak for all of them.
- As I write, I’m remembering various people who’ve voiced these assumptions to me over the years (where “over the years” includes the decade and a half when I was symptomatic but undiagnosed). It’s easier for me to write this way, but I am not trying to suggest that current readers have made any or all of these assumptions.
Dear humans of Earth (and other entities as applicable),
If you’re reading this, you know at least one person with endo: you know me. According to best estimates, the odds favor that you know at least one other person with endo as well. I cannot speak for all of them, but I know that some of the assumptions you make about my condition and my life have begun to… grate.
Consider this letter a plea to check those assumptions at the door.
Which assumptions? Glad you asked!
- Don’t assume you can tell my pain level from my mood. — It’s true: Sometimes I have bad pain and am in a bad mood. However, it does not necessarily follow that being in a good mood means I have no or low pain. Sometimes, I can be in average-for-me pain and still in a good mood due to other happenings in my life. Conversely, sometimes I am in a crap mood for reasons mostly or entirely unrelated to endo.
- Don’t assume you can tell my pain level from my activities. — I mean, yes, if I am curled up somewhere in the fetal position, chances of intense pain are pretty high. However, just like not all pain levels are the same, not all pain types are the same. There are certain situations — usually involving familiar situations and steady as opposed to spiky hurt — where I can participate despite a high level of pain.
- Don’t assume being in pain means I don’t want to do something. — Sometimes this is true for me, yes. But other times, pain means I can’t do something or can’t do it safely. And sometimes, I still want to participate, but I’m not sure if my inclusion at this pain/focus/energy/mood level would be a burden to you.
- Don’t assume my inconsistency is an excuse. — Endo is inconsistent; life is inconsistent. All pain types are not the same, and it may very well be that I could do Thing X in Y Pain last week but cannot this week. It doesn’t inherently follow that my actions were dishonest in either case.
- Don’t assume that I’m always on painkillers, that I can always be on painkillers, or that I like being on painkillers. To clarify, I am referring to narcotic pain medications since I’m pretty sure no one is worried about me getting high on naproxen. First, I am prescribed too little medication for my pain duration and frequency. Naturally, I ration them as if each pill were made from liquid gold; the number of times my pain levels might warrant taking such a medication is significantly higher than the number of times I actually take it. Second, and another part of the reason for spacing out doses, there are a number of things I cannot safely do on narcotics (and yes, may be able to perform better with pain, given that I’m more experienced with the pain) — driving always, sex always, and sometimes cooking, teaching, and sleeping. Third, I am a decided non-fan of some of the side effects of narcotics. It’s counterproductive to feel drowsy or spaced out while, for example, writing a blog post or sitting in a staff meeting. Two pills of Tylenol 3 (or anything stronger) brings me hallucinations along with pain relief. And, um, have you ever tried passing hard, constipated stool through an endometriosis-infused bowel?
Though they certainly have their place in my pain management arsenal, and though I certainly appreciate having them available in any amount, the bottom line is that my pain medication is not about getting high.
- Don’t assume I’m interested in your endo management suggestions. — I’m assuming most people know by know that I don’t want to hear how your step-cousin’s grandmother’s landlady bested endo by giving up coffee and ingesting only free range, fair trade, certified organic unicorn farts instead. (On second thought, maybe I do want to hear that particular story.) But I also may not want to hear about the new endo medication you’ve read about — that may or may not be so new, that may or may not be so effective, that may or may not have risks or side effects with which I can’t deal. At this stage in the game, the same goes for endometriosis specialists and specialty centers.
It’s not that I never want to hear about these options, but by now, frankly, I’ve done a lot of the research. I’ve checked out the drugs, surgical procedures, and alternative therapies. Even among the brightest and best, a lot of them are not options for me right now — usually due to some combination of location, finances, the particular manifestation of my endo, and my personal priorities. It hurts to get my hopes up at the potential for better treatment only to have them dashed a few minutes later as I realize this newest, bestest thing is neither for me — and that is what happens about 90% of the time. Some days it hurts too much, and I just cannot fucking deal.
It’s not that these ideas are never true — at least, not most of them — but the presence or absence of them on any given day as well as the realities behind them are considerably more complicated than may appear on the surface. If it’s something for which you’d like an answer or a line of conversation you’d like to pursue, please check in with me before barging ahead.