Thursday, October 6, 2011

Chronic Illness, and Everywo/man M.D.

This post inspired in part by Invisible Illness Challenge 23.

Yesterday, I was in a lot of pain all day and not exactly quiet about it. I complained, I explained to professors and school officials and doctors what was going on, I asked friends to help me out in one capacity or another, and I declined a few invitations because I didn't think I would be up to doing them physically.

Most people were nice and helpful, and did the things I needed them to do so that I could make it through the day or week. Two different deans are now in the loop on the fact that I'm struggling with all of my work because of pain, the doctors know enough to prescribe extra help/advise me on how to proceed, and my professors know I'm not blowing them off for no good reason.

However, I got some responses that were much less helpful, which is what I want to talk about today. Some of these were:
  • Are you taking your vitamins? You should also start eating flax seed.
  • Have you tried ice and/or heat?
  • Why can't you come to X, Y, or Z event? You liked it last time! Okay, well then you should try B to make you feel better.
(Actually, trying to think of them, it occurs to me that there weren't that many different reactions in this group, although the second one was repeated a lot.)

To start with the second one first, it's not terribly helpful because everyone from my physical therapist to acquaintances have suggested it. I'm already using heat. I haven't tried ice. I might at some point, but can't do it right now. A few people I appreciated new information given. Mostly the same thing gets annoying. I've thought of it, thank you, I'll do it again later. This one doesn't actually bother me too much except when I'm extremely stressed and cranky.

The third reaction was one of the ones that set me off and caused me to make a post I'll quote later. The invitation is okay. Asking why I can't or won't do it, while intrusive, is also okay.

However. Taking the non-opportunity presented and "making sure you're taking care of yourself" by asking if I'm doing B is a very not-helpful response. It assumes that 1) I'm not already doing everything I can to get better (and seriously, why would I not?) and 2) your expertise is greater than mine. This is what I mean by "Everywo/man M.D." Proximity to me does not give anyone leave to offer advice, unless I've already asked for it.

Likewise, me publicly or privately posting or saying that I don't feel well or am in pain (or answering someone's question about how I'm doing) is not an invitation to offer unsolicited advice. I have doctors, thank you. I have also been dealing with this for a while, it's just particularly acute right now.

This was my response to advice last night, while I was sleepy, drugged, and still in pain, and therefore not in the mood to be polite:
Dear all: unless you are a medical professional whom I've asked for advice, please stop offering suggestions for how to fix this. I'm already working with the health center & deans offices & a physical therapist.

Unsolicited advice is starting to piss me off.

I've had some interesting responses. Some people backed off, one person "liked" the status, one person immediately asked if it was directed at hir (it was), and one person responded with, "Then stop constantly posting your ailments?"

That last is the reason I'm writing today.

Dear World: When I am hurting, I am likely to complain whether or not I'm doing something about it, because I hurt, and the alternative is crying. Other people asking me, "have you tried--?" or variations thereof, are ultimately trying to make themselves feel better. If I don't follow the advice, or if I say straight up I'm not going to, they tend to get offended. That's why I say it's about them.

They feel helpless,They know I'm in pain, they want to do something, so they tell me what to do. [If your response to that is "huh?" then you've begun to see the problem.]

[Edit: Someone pointed out to me that people don't necessarily feel helpless so much as perceive my speaking about having an issue a plea for help. In addition, it's not quite true that I feel helpless. Overwhelmed, certainly, and like I need help. But there are plenty of proactive things I do that actually keep me from feeling helpless. The point stands that telling me what I should do is not generally helpful.]

Guess what! I feel a little helpless too, already, in addition to grumpy and overwhelmed by external and internal demands. If I can't meet yours, it makes me feel bad, like I've failed again, and that is why I'm requesting that people not give me advice if I haven't asked for it. It makes me feel worse.

Better response:
"You're not feeling well? I'm sorry to hear that. Can I do X to help you? No? What can I do?" And if the answer is nothing, don't be upset. Just asking like that helps. Offering to check on me usually helps. This type of response puts responsibility on the other person to do something, rather than giving me responsibility to do something for the other person. And if the goal is to make me feel better, why is the latter something anyone would want to do?

To sum all this up:

Responses that are helpful and not harmful to me:
  • Offering to bring me food
  • Offering to help with mobility issues
  • Asking how I'm doing and caring enough to listen to the answer
  • Checking up on me every once in a while
  • Hugs (physical contact in general tends to be awesome)
  • Visiting me
  • Helping me carry stuff
  • Letting me copy notes when I miss class
  • Being understanding when I have to cancel plans or decline an invitation
  • Riding in the elevator with me
  • In general, helping me be included in activities by offering alternatives or resources
  • Etc.
Responses that are not helpful and likely to upset me:
  • "Have you tried...?"
  • "You should..."
  • "Why haven't you...?" "Well you should have..."
  • "This other person I know has W and zie does..."
  • "I want to make sure you're taking care of yourself!"
  • "I'm right because I understand what you're going through and have similar problems."
  • "It won't hurt you to try..."
Do you see how there's substance in one and not the other? How the first list is an active way to help me, and the second is a passive way to make me help myself (in the way the other person thinks is best)?

Yeah. Don't do the second one, please. Actions that fall in the first category are very welcome, though, and thank you to everyone who has done some variation on those things.


  1. "It won't hurt you to try..."

    This one is very much not my friend because it sometimes reveals an un-okay amount of cluelessness from advice-givers. When I hear it, it tends to be in the form of prescription meds and/or alternative treatments, which doesn't take into account the "hurt" of:

    -- financial cost
    -- time, effort, and spoons
    -- physical side effects
    -- social stigma

    Sometimes "it can't hurt" suggestions really can hurt.

  2. I really hate that one. One of my relatives likes to use it when trying to convince me to be sociable when I'm feeling rotten. I'm somewhat introverted. Social activity costs spoons. When I'm running out of spoons, I have no wish to spend them on that, as opposed to eating or something that'll make me feel better.

    It's also sometimes followed up with, "Well, when I'm feeling the way you are, I manage to do it anyways." My usually silent response is, And nobody likes to be around *you* either at that point.

    I hear you on the list you gave. There are some suggestions I've gotten where I have that same list in my head of why it's a very bad idea.