One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.
Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.
I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.
And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!
I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.
While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.
This “obsessed with pain” idea is bizarre, isn’t it? I ignore my pain. A _lot_. I laugh at the abled folks who prance about saying “Listen to your BODY”, because if I did that, all I would hear is my body screaming at me.
I check in with it two or three times a day for monitoring purposes, then shut those messages down as much as possible. To the point that I not infrequently get minor injuries (lacerations, haematomas), and have no idea how I got them. That sort of ordinary pain just doesn’t register on my scale.
I get this message all the time: I am simultaneously spending too much time thinking about my body (“Why can’t you just push through your pain/ If you didn’t think about it so much, it wouldn’t be this bad”) and not enough (“If you listened to your body, it never would have gotten this bad – you should know your limits/know when it’s serious.”)
If I listened to every damn pain signal – hell one out of every 17 pain signals – my body sent me, there would be nothing else in my life besides that. Literally nothing.
And yet, the amount to which I am able to ignore my pain is never understood: If I am able to ignore it, it must not be “that bad”. If I am able to do other things besides lie in bed and moan about how badly I am feeling, then I must be “feeling better” and am expected to act accordingly.
… It is not that I am STRONG ENOUGH to continue to live my life despite the strength of my pain; it must be that my pain is weak enough for me to overcome it.
in other words: Yes, everything you’ve said here.
There doesn’t seem to be any way to win, does there? Either it’s all in our heads and we should ignore it until it goes away, or it’s actual pain and… we should buck up and ignore it and act like “normal” people. (But then if we work through the pain, as we generally have to, it couldn’t have been THAT bad after all…)
Which usually ends up for me, with feeling far worse than if I’d taken things easy in the first place, and completely out of spoons for the million “more important” things I should apparently put ahead of just, y’know, trying to function.
Lauredhel, I hear you about the injuries. I have dozens of bruises and scrapes that I can’t ever seem to recall getting, and half the time I don’t even notice them until my partner points them out in an ‘ouch, what did you do?’ kind of way, and I can only stare blankly because I have no idea. Three years of (diagnosed) fibromyalgia and twelve years of monthly migraines and near-constant headaches… bruising doesn’t even cause a blip on the scale.
Thank you so much for this post, and also for the comments. Soooo relate.
@Lauredhel
I laugh at the abled folks who prance about saying “Listen to your BODY”, because if I did that, all I would hear is my body screaming at me.
This made me laugh so much – thank you!
p.s. of course, laughing hurts.
i think i’ll do it anyway.
I’ve just been on a National Health Service course (I’m British) about how to deal with ME and it was so much like all the attitudes you’re criticising. I knew it would be, but I was hoping I could take some of the good and leave the crap, but I ended up being really angry.
(I wouldn’t read this if you are triggered by ableist healthcare advice, but I just wanted to relate my experience to show how these stereotypes are actually endorsed by the medical establishment in the UK).
Whichever way you went you were doing it wrong.
You had to keep a record of when you were sleeping, but it was wrong to look at the clock and you shouldn’t worry, most people exaggerate how much they need to sleep ect. At the time I was sleeping about four and a half hours, often interrupted.
If you were thinking about your pain you had to say the word stop aloud, before you got into a negative spiral of obsessing. It was important to bear in mind that pain and fatigue cannot harm you (I beg to differ) and that they aren’t a sign that anything is physically wrong. You should make a list of symptoms of a relapse, but you shouldn’t monitor your body. If you were returning to work or education, you would be tired, but not fatigued. Everyone is tired when they start something new. You should sort out your unhelpful beliefs about fatigue!
You had to learn to pace yourself and delegate, but it was also important not to let people help, because that would make you more dependent and psychologically increase your pain. You shouldn’t show any pain behaviours, because then people would be sympathetic and this might tempt you to increase your pain behaviours and therefore psychologically increase your pain.
The course also talked about mindfulness and relaxation, which I actually practise and enjoy, but the concept they were talking about seemed very different and more simplistic (but then again I’d learned by a book by a PWD). The course leader seemed disappointed when I said that mindfulness didn’t reduce my pain, just kept it at a steady level by decreasing muscle tension and stress.
At this point I’m very resentful of anyone without a chronic fatigue or pain related condition who wants to tell me what to do.
So relevant to my life right now. Esp. since I’m starting to communicate with my family more about the pain I experience on a daily basis. I don’t think they’re used to it, but they don’t realize that it’s the same pain I’ve been feeling for years now. I’m just actually talking about it, instead of hiding it or ignoring it. I’m trying to cope and connect with loved ones through communication and venting, not “obsessing”. And that doing (or not doing) certain things throughout the day is a part of that. Not being lazy, but coming to terms with how I must cope with the specific needs of my body and mind.
@lauredhel @Anne Ardeur
Oh satin yes. I’m constantly bruising or scratching myself somehow and I often don’t see it for days because it never occurs to me that maybe some of the pain I feel is because I whacked something. It’s just “oh whatever” and then “wait where did that come from? I don’t remember that.” Being a clutz that bruises easily probably doesn’t help but eh. It puts some more color in my skin?
This post was JUST what I needed today. For some reason admitting that has me a little misty. I had to ignore my body yesterday, and while I don’t have Fibro I have lots of other pain causing things. I had to take my kitten in to another shelter to get him “fixed” since apparently reproduction means he’s broken. The shelter that screwed this up the first time paid for it monetarily but I had to go on the bus FOUR times, my limit is two on a good day, then the e-collar went missing etc. I knew I was going to over extend myself but today I started to fall into that trap of “Why am I hurting so much more?” and there are reasons including falling out of bed and on my face. I know I am fine as much as I ever am but between the snow and feeling like I should be doing more when I literally only have some arts and crafts time scheduled … I had no idea why I wanted to push myself.
Thank you, thank you thank you. I hope this is coherent, thinking is not working out so well today but the reminder that it is okay to do things at my pace was wonderful and I like having an article that doesn’t mention cutlery to explain pain to people when I can;t quite put the words together.
I think that got through to most of the people I have to deal with was the time I burned myself on a frying pan. THEY could smell my flesh burning (third degree burns, scarring, talking about skin grafts, and I COULD NOT FEEL IT. Not because of nerve damage, and I’m not diabetic, I could not feel it because the rest of me hurt so much more than that that my brain simply didn’t register it. The ER doctor ordered a couple different brain scans and was lke “I’ve never seen anything like this. Her brain is literally rewired itself and pain perceptions to cope with what she is suffering. Anyone else would be SCREAMING AND THRASHING right now, or possible having a stroke or going into a coma. ”
they doped me up with morphine and I started freaking out because it felt “wrong.” it took me several minutes to realize why it felt wrong, it had been so long since I hadn’t been without severe pain, I didn’t know how to recognize it. I’ve often explained to them that their little smiley number chart? I can’t even relate to that. My reality starts at what they think of as seven with a slightly sad face and heads towards an unsmiley face holding a gun to it’s temple.
Keeping track of pain is the one of the best ways for me to figure out whether I need to fix any of me. I have a connective tissue disorder, which means I dislocate easily, with little ‘trauma’. Unless it won’t work, the only thing that tells me a joint is out is the pain. And with dislocations, the longer they’re out, the more damage you do to yourself and the harder they are to re-set. My pain is important to my self-care.
I also have fibro in addition to the connective tissue disorder, so like the OP and most of the commenters, I have to track pain and fatigue so I know what I’m capable of and when I need to scale back or push forward.
My day starts with an automatic kind of mental scan of my body, starting with the most likely trouble spots (shoulders, neck, back, hips, knees, fingers, wrists, ankles…etc) and heading towards the less likely ones. If I don’t do that before I get out of bed, I occasionally go to get up and collapse on the floor because something won’t hold or because it causes such a horrible increase in pain that I nearly faint. The pain-scan is not just about functioning, but also about safety.
Speaking of safety, if I didn’t keep track of pain and fatigue, I wouldn’t know when it wasn’t safe for me to be out by myself, or be driving, or be doing legal work that affects people’s lives. It’s for the good of myself and the people around me that I track how I’m doing.
~Kali