Invisible Illness Challenge 23

Yellow sticky note with 6 blue ovals and the text, "Period starts tomorrow: double up your NSAIDs TODAY!"

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.

  1. More often than not, it’s in a context where I haven’t actually asked for suggestions or advice.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.

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I'm here. I like stuff. Some other stuff, I like less.

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Posted in MenstroMonster, non-asana, satya
9 comments on “Invisible Illness Challenge 23
  1. Autumn says:

    I hear everything you’re saying here, and understand it well (yes, I’ve tried a chiropractor for my back pain, thanks for the alert of their existence…), but at the same time the only thing that helps me when I’m in crisis mode with my back pain came from one of these well-meaning suggestions, and certainly I don’t hesitate to share it with others with the same condition. (It’s terribly plebian–acupuncture–but I hadn’t ever considered it for back pain because I was still thinking of my back pain as a localized issue instead of as a generalized issue, so I was seeking site-specific treatments instead of holistic ones despite having used holistic medicine before.) I’m surprised by how many back pain sufferers haven’t tried it when I mention it, though they could be placating me, as per your point #4. There’s certainly a difference between back pain and chronic invisible illness, though–most people have experienced back pain at some point and so even though I get the feeling some people think I’m exaggerating when I say I literally can’t stand up straight when I’m in crisis mode (and have at times had to crawl, which, even though I’ve thankfully been alone during those moments, is humiliating), certainly it’s not like chronic pain–nobody’s accused me of my pain being “in my head” or anything.

    I wonder what the difference is between advice that’s helpful and warranted, and when it’s not? Because as you said, and as my experience shows, it can indeed be helpful, and the person who suggested acupuncture isn’t someone I’d asked for help. Obviously the biggest reason for it not annoying me was that it worked! But I also think that it was because she said it sort of offhandedly, “Oh, my brother has severe back pain and gets regular acupuncture for it”–so she really was sharing an experience, and even one that had nothing to do with her, so it removed it a bit, made it less about her putting some sort of emotional duty onto me, of gratitude or usefulness or whatever. Maybe the key is the person not trying to be a hero? Keeping the focus on the issue and not on themselves, or even on you? Hmm, I don’t know.

    • Tori says:

      I wonder what the difference is between advice that’s helpful and warranted, and when it’s not?

      I definitely respond to shared experiences differently than I respond to unsought “have-you-trieds.” Even with the latter, I don’t generally find single questions frustrating (except in the case of suggestions that are outright offensive). I understand curiosity and wanting to be helpful. What does get under my skin is when other people basically co-opt a conversation either to ask questions or to give advice, which are mainly the times I was remembering when I was writing this post.

      Another part of the context that I didn’t mention in the original post, is that the questions sometimes come from people I don’t know very well and in situations where I’d prefer not to go into a lot of detail. (The details associated with endo are sometimes intimate and sometimes off-putting to others. While I feel free to talk about them on my blog — because it’s basically my space — I’m more self-conscious in other places on- and offline.) But if I answer with just “yes, that didn’t work for me — thanks, though,” sometimes people’s response is to inquire further (offering more suggestions, asking why something didn’t work, etc.), which still contains the issue of, “hey, I do not feel like sharing today.” :P

      • CaitieCat says:

        There’s also the small corollary that by continually offering ways to “make it better”, they’re implying that we are “broken”, and in need of fixing. Which irritates the HELL out of me.

        Anyway, major grokkage on the post, pain-sister. :/

        • Tori says:

          On an individual level, it doesn’t bother me as much when the advice-giver has reason to believe that I’m looking to “make it better” — which, then it doesn’t usually fall into the realm of #1 on the list. But yeah, a lot of the time now, I’m not really looking to change what I’m doing because this is what I’ve determined works best for me.

          And a fair number of “have-you-tried” back-and-forths have come from people who seem disappointed or inconvenienced or offended by whatever it is I can’t (like driving, sometimes) or choose not (like having children) to do. Which… ick.

  2. OMG I hear you on this! (In my case, the invisible illness is depression, and the well-meaning many try to share what helps them when they’re somewhat grumpy and feeling blue. I feel like they’re telling me that not only do they completely not get it, they think I’m some kind of weakling who can’t deal with ordinary bad feelings. Thanks a lot.

    • Tori says:

      Yup. Comparatively, I get some people sharing their cramp suggestions* for endometriosis.

      “Have you tried Midol?”

      * I should clarify here because I have actually solicited advice from folks who may have only had normal menstrual pain experiences to draw on. The folks who get under my skin are the ones who offer these types of suggestions when I wasn’t asking.

  3. *applause* SO MUCH THIS TO INFINITY

  4. Palaverer says:

    Here’s one I rankle at: anytime I have cold symptoms–cough, sniffles, etc–people suggest I go to a doctor. Do these people (a) have no idea that some of us don’t have insurance and going to the doctor costs a lot more, both from the bill and from taking off work and (b) why don’t they know that cold viruses are not curable by doctors? Going to a doctor results in “yup, you’ve got a cold. Take some Nyquil.” I can skip the doctor and go to CVS, thankyouverymuch.

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