So I’m doing this invisible illness challenge on my Tumblr. A lot of my responses have been short, so I’ve left them over there. But the one about getting under my skin… well, it did what it said, you know?
23. Want to know a secret? One thing people say that gets under my skin is:
“Have you tried…?”
It’s the prefix to various symptom management suggestions. While it is sometimes warranted and helpful, often — regardless of the kindness of the suggester’s intentions — it is not.
- More often than not, it’s in a context where I haven’t actually asked for suggestions or advice.
- Not only is the suggestion almost always one I’ve heard before, it’s almost always one I’ve heard dozens of times before. In situations where I’m actively seeking suggestions, that’s going to happen, and I understand. But — see above — that is generally not the case.
- When I explain that I have already tried Suggestion A, and it didn’t work out for me, people generally move to, “Well, have you tried Suggestion B?” Except that Suggestion B commonly meets points 1 and 2 above as well. Occasionally, people continue to offer Suggestions C, D, E, F, G, H, et cetera, in this same fashion. It’s more common to offer fewer suggestions and less common to offer long lists, but — see point 1 — sometimes I just do not have time for it.
- Many people seem disappointed when they don’t/can’t offer a suggestion that works, and I feel bad for disappointing them. Their feelings aren’t really my responsibility here, but I still feel inadequate and guilty, like it’s my fault for being too broken to be fixed. Left to my own devices, fixing is no longer a priority. So it’s a little bit unlovely to reengage in that cycle of hope raising and dashing.
- Sometimes, people seem quite affronted when I’ve tried all the suggestions, like I’m blaming them for offering bad advice. At that point, I stop feeling guilty and start feeling annoyed. Absolutely, I believe that one’s sister/cousin/friend/whoever tried their suggestion and had it work fabulously — for them. Just because a particular option didn’t work for me doesn’t mean the suggestion was bad advice — but it does mean it didn’t work for me.
- Heaven fucking forbid I dismiss a suggestion I haven’t tried as unworkable for me or — worse — a bad suggestion in general (I am looking at you, people who suggest having babies JUST to try and relieve endo pain, because that is at least 3 kinds of shit**). Then, of course, I “must not really want to feel better” but rather “just like whining for the attention” — because, you see, I “haven’t tried everything.”
It’s not my obligation to place my body through every management technique ever offered for the sake of appearing serious enough about managing my endo. Nor is it my responsibility to justify my treatment choices to anyone who asks.
It is my body, and it is my right to be the boss of it. Given that my endo choices are ultimately about my own body, it’s okay for other people to mind their own business.
** It ignores the reality that some people with endo do not want to be pregnant or have babies now or ever. It ignores the reality that this is basically using a new human being as part of a pain management plan. And it ignores the reality that a significant chunk of people with endo have some difficulty (up to and including infertility) if and when they try to conceive.