I just to the “UBC – Chronic Pain Needs Assessment” survey, and now I am pissed off. It is obvious whoever wrote the survery doesn’t get it. The questions are of the type where you can disagree, partly agree, etc. I have Ehlers-Danlos syndrome, Lupus and/or Mixed Connective Tissue Disorder, and an opiate intolerance. These are some of the questions, or rather statements, they want an opinion on. I am going to give what I would like to answer, but they just want you to check a box on whether or not you agree.
I worry all the time about whether the pain will end
Actually I know the pain won’t end, so there is no point worrying about that.
I feel like I can’t go on
Well the options are go on or…..and I am not there yet.
It’s terrible and I think it’s never going to end
It isn’t going to end. There is no “think” about it.
It’s awful and I feel that it overwhelms me
Sometimes, but the choices are put up with it, or……
I feel I can’t stand it any more
How many different ways do you want to state this one? Read the above response.
I become afraid that the pain will get worse
Considering the fact that the pain has increased every year I have lived, I think this one is kind of moot.
I keep thinking of other painful events
Try not to actually. Just too depressing.
I anxiously want the pain to go away
Wtf? I would like it to go away. Is it causing me anxiety? Not really, I know it isn’t going to so……
I can’t seem to keep it out of my mind
Considering every step I take is painful, that any repetitive movements cause inflammation and pain….I am aware of it, does it keep me from doing some things no. Is it possible to completely ignor it, no.
I keep thinking about how badly I want the pain to stop
Considering the definition of “chronic” I don’t think this is likely, so not something I usually think about.
There’s nothing I can do to reduce the intensity of the pain
Actually hot baths help, but I haven’t figured out how to live in a bathtub yet.
I wonder whether something serious might happen
WTF? Chronic pain isn’t serious? I don’t have to wonder, I am already there.
And of course I just love some of the yes and no questions
During your lifetime have you experienced physical, sexual or emotional abuse?
Somehow I dont’ think sexual abuse had anything to do with a genetic disorder. I come from a crappy gene pool, and hurt long before the sexual abuse.
So after I finished taking the survery I decided to take a look at their resources, and got even more pissed. I listened to one arrogant, condescending doctor talk about the need for physical activity, because inactivity makes the pain worse you know. Everybody experiences pain you know, 80 year olds hurt all the time. They just ignore it.
The videos and resources have lovely titles that imply the pain is all in your head. You just need to ignore it, reduce your stress, get physically fit. Sports solve everything. Tell that to my feet.
I was removed from Phys Ed way back in 8th grade because of injuries caused by the physical activity. Jumping rope caused my first knee dislocation at 5 years old. I had operations on the right knee at 6 and 8, on the left at 10 and 12. I have a leak in the synovial on the left knee which means it goes dry if I am on it too much. Both feet have nerve damage that results in constant pain. Then of course there is the hypermobile pubic symphysis. The ligaments holding my pubic bone together are too lax. That means it somes causes me to be off balance. Oh yes, physical activity is going to make it all better.
I ride my bike when I can, while wearing a belt that holds my pelvic bones in place. Can’t ride up hills though, and have to be careful not to twist my knees. Water feels good, but when you have unstable joints swimming is difficult. I just enjoy the weightlessness that renders me almost pain free for a time.