Six Things I’ve Learned From Dealing With Chronic Pain
As I have written about in many locations around the web (including this site), I have chronic pain and fatigue caused by a condition called fibromyalgia. I started experiencing symptoms at 20, was diagnosed at 21, and in the eight years since my diagnosis have learned some things that may or may not prove useful to both other people with chronic pain and/or health conditions, and “healthy” people as well. The following is less about what having this condition is like on a daily basis (please see my xoJane article linked above for more on those aspects), and more about (insert triumphant violin swells here) WHAT I’VE LEARNED from having a debilitating illness that I will have for the rest of my life:
Sometimes a “positive attitude” is not the best course–try to aim for a realistic attitude instead. I know that maintaining a “positive attitude” is all the rage these days, but for some people it is simply not a great choice. There is no faster way to make yourself feel bad about having “negative” thoughts/energy/whatever than to try to actively banish these thoughts by trying to “think positively” instead of, y’know, dealing with those negative feelings. Bad feelings are a part of life, and they need to be dealt with so you don’t end up making yourself feel worse by trying to wish them away. This is why I try to cultivate a realistic attitude–I have both good days and bad days when it comes to pain and fatigue, and I can acknowledge and work with that instead of stuffing any negative feelings down under the guise of being POSITIVE all of the time.
Never underestimate the power of human ridiculousness. For whatever reason, people who aren’t sick or in chronic pain love to give advice to those who are–even when we haven’t asked for it. I cannot tell you how many times I have been stopped by a “well-meaning” stranger who demands to know why I use a cane, why I have a limp, or starts yammering that I should totally visit their naturopath because their naturopath “helps people like you regain their health!”
The scariest reactions come when I politely tell people that I’m not interested–many of them have instantly become petulant, whiny, or have gone from zero to asshole in about two seconds flat because they’re ONLY TRYING TO HELLLLLLLLLP; suddenly, it’s as if I am the rude one for not wanting to engage with a complete stranger about my medical condition, or don’t drop everything to thank them for their magical able-bodied advice. People with chronic pain, illness, and/or disabilities have to deal with this type of thing on the daily, both in person and online, from ostensibly “well-meaning” and usually healthy people who are eager to tell sick people how we’re doing EVERYTHING WRONG (internet humorist The Frogman had a great post about engaging with a “helpful” commenter of this very sort). Some ask, “But why can’t you just TRYYYYYYY homeopathy/juice cleanse/positive thinking/doing energy work with crystals/getting more exercise/going vegan/going on an all-bacon diet/eliminating sugar/eating more sugar/taking vitamins?” In many cases, we’ve already tried these things and more. But the ridiculousness continues unabated; I’m sure that as long as people have chronic illnesses, there will be “healthy” people around to tell us what we should be doing to be more like them.
Body acceptance is often more complex than just “loving your body.” It’s become really easy for healthy people (especially “body positive” feminists) to say “Love your body!” and leave it at that, but as anyone with a chronic illness will tell you, it can be downright difficult to love a body that makes you sick or actively causes you pain. Loving your body is a great goal, and while it’s great to see more women striving for it, such rhetoric often leaves people with disabilities, chronic illnesses and pain out because our bodies are already portrayed as not “normal” or beautiful enough to be worth loving (there’s more on this in my article, written for DI last year, on the “love your body” movement and women with disabilities). “Loving your body” on days when it confines you to bed seems counter-intuitive, and for a lot of folks with chronic pain, it’s just not going to happen. However, body acceptance can be an ongoing process of meeting your body where it is, and striving to be okay with a chronically ill body–even on bad days.
Having chronic health issues, pain or a disability does not make you weak, or a bad person, or a failure. A lot of people in the Western world love to connect the absence of perfect health with moral failing(s), and many of us with chronic health problems have internalized this in one way or another, which is bad news. So, with a huge nod to the disability rights movement, I’d like to reiterate the following: you are not a bad person if you have chronic pain, or chronic fatigue, or a disabling illness, or all three. I know this is a hard thing to keep in mind, especially since some nondisabled people really love to play the “what did YOU do to cause YOUR illness?” finger-pointy game all of the damn time (more on that, from our own s.e. smith, in this fantastic piece). Hell, I have health conditions other than fibromyalgia, and I still struggle to remember this most days. But the vast, vast majority of us did not do anything to “cause” our conditions, nor are we weak or failing at life somehow.
Trust your gut instincts. If something or someone–a treatment that you’re not quite sure about, a specialist or doctor who treats you like crap even though you are the patient, a new series of dietary restrictions or an odd protocol for people with your condition that one “maverick” physician says that the medical establishment is trying to suppress–feels sketchy, “off,” or not quite right, it is completely okay to not follow through or to take another course of action. The number of times that I have ignored my own “gut instinct” and then regretted it later has shown me that our weirdly-acting instincts just might know more about certain situations than our brains do.
Taking care of yourself should be your number one priority–despite the fact that society loves to tell us otherwise. Sure, we are all expected to be superwomen nowadays, but even with the important reminders of “self-care!” that periodically spring up from activist communities, women are still expected to take care of everyone else before they even think about taking care of themselves.
This can be very dangerous for women with chronic pain and illness; many of us constantly worry that we’re not considering other people enough, not doing enough, not helping enough like “good” women should–even though we are in pain all of the time and are often rendered physically unable to do everything. The societal message, meanwhile, tends to be one that rewards what some academics call the appearance of “effortless perfection”–the idea that women should do everything and make it look easy at the same time. Oh, and we also get the message that taking care of our own needs first (or at all, really) is “selfish.” I still struggle with this one, but I am making progress–and I hope you are, too.