I kept reading about Blog Against Disablism Day yesterday, and it didn’t occur to me until this morning that maybe I could contribute something to it. I recently reread John Scalzi’s “Being Poor Is…” post from back in 2005, and thought that might be a good way to contribute something. So this is going to be my “Having Chronic Pain Is…” post. I can only write accurately about the things that apply to me in particular, but if anyone else feels like contributing additional things in the comments, feel free. All of the below have been my experience at one time or another, and I’m sure I’m not alone. These are some little pieces of what it’s like:
Having chronic pain is…
Having chronic pain is being unable to sleep because of the pain, and knowing that because you didn’t manage to sleep, the pain will probably be worse tomorrow.
Having chronic pain is 10 years of going to doctors and physical therapists, all of whom have different diagnoses, most of which amount to, “Well, you’re hurting for some reason”, but in slightly more scientific-sounding terminology.
Having chronic pain is choosing where to live and what to do based on what will or won’t be sufficiently stressful to cause flareups.
Having chronic pain is knowing more about what works and doesn’t work than your doctor, and trying to decide whether or not you should say so when they prescribe something with no basis in evidence.
Having chronic pain is deciding whether or not to go to a movie with friends based on whether or not you will be able to endure the pain that will result from sitting for that long.
Having chronic pain is deciding whether or not to visit a friend based on whether or not the process of traveling to see them might cause a flareup.
Having chronic pain is choosing between celibacy and flareups.
Having chronic pain is never being sure if it hurts today because of the usual variation in symptoms, or that thing you did yesterday, and knowing that if you avoided every “thing you did yesterday” that might have caused pain, you would never do anything at all.
Having chronic pain is wishing there were fewer hours in the day, because you can only spend so long moving around, and you can only spend so much time being still, and the day is too long for the maximum allowable amount of both.
Having chronic pain is seeing motivational posters about pushing yourself to get fit, and wishing it could ever be as simple as that.
Having chronic pain is enduring as much pain as you can possibly stand before telling your supervisor that you really can’t unpack any more boxes, because it hurts too much.
Having chronic pain is realizing that for some conditions, our modern medical industry doesn’t know all that much more than it did 100 years ago.
Having chronic pain is having things you’ve already tried recommended to you over and over again.
Having chronic pain is trying every form of exercise and exercise equipment you can imagine to try to find some form of exercise you can do without pain.
Having chronic pain is feeling sorry for disappointing your physical therapist by not getting better in spite of everything they’ve tried.
Having chronic pain is being stressed out about being stressed out, because you know the stress will lead to pain, and being unable to break the cycle.
Having chronic pain is trying to decide whether or not (or how) to tell your doctor or physical therapist that you know that the treatment that they are prescribing doesn’t work — and knowing that you may have to tell them that about the next thing, and the thing after that.
Having chronic pain is choosing your job, your home, and your leisure activities based on what will cause pain instead of what you enjoy.
Having chronic pain is being prescribed painkillers for when the pain is bad, and not taking them when the pain is bad, because if you did, you’d be taking them all the time.
Having chronic pain is trying the bullshit remedies because there’s nothing else left to try.
Having chronic pain is debating about whether or not spend money that you can’t afford to spend on treatment that probably won’t work against the off chance that it could be the one that will.
Having chronic pain is never being able to travel.
Having chronic pain is wishing you believed in the bullshit remedies, so at least you could get the placebo effect out of them.
Having chronic pain is having the pain be the last thing you are aware of before you go to sleep, and the first thing you’re aware of when you wake up in the morning.
Having chronic pain is making decisions based on what will cause pain that you can endure versus what will cause pain that you can’t, rather than on what will or won’t cause pain.
Having chronic pain is feeling very strange, and realizing that what you’re experiencing is the sensation of not being in pain, and that you had forgotten what that felt like.