Thursday, April 8, 2010

The Pain is real even though you can’t see it

image I have been in extreme pain the last few days because it has not stopped raining.  I know that there are places that are suffering a drought right now, but I keep wondering if I should be collecting animals and building an ark.  When you have fibromyalgia, rain is not just a little inconvenience, at times it feels like nature is conspiring to make you as miserable as possible.  I have spent the last few days sipping on Brown Cows (yes it’s medicinal) wrapped in an electric blanket praying for relief.

In the last few days there has been a lot of talk about prescription pain medicine and addiction on CNN and while I believe the conversation on addiction is important, not talking about chronic pain is an erasure that is absolutely maddening. There are many conditions that can cause chronic pain and it needs to be recognized that some of the people that are taking these drugs are not just simple addicts looking for a fix, they are trying to have some semblance of life.

Unless you live with chronic pain, you have no idea what it is like.  You don’t just get used to it or learn to tolerate it.  You spend your days looking for any kind of relief that you can find.  There are times when the pain is so overwhelming it invades your sleep and you cannot process anything but the hurt.  It changes who you are and how you relate with people.  I sometimes find myself snapping for no other reason than the pain.  I have to consciously remind myself that no one did this to me and not to lash out at those I love.

Simple tasks become impossible or require strategic planning.  Today I wanted to make a dish that I love, but I realized that I didn’t have any apples and because the pain is so extreme, a simple trip to the local farmers market is out of the question. So much for that.  I then had to think of something I could make that would not involve copious amounts of chopping because my hands ache.  But that was not my only requirement: whatever dinner consisted of could not involve prep time that involved me standing on my feet for any length of time or having to get up to check it on the stove. Tonight’s dinner was not selected based upon what we like or crave, but my physical ability to prepare it for my children. 

When I hear health advisors complain about the processed food people eat, I wonder if any of them considered those who find it painful to simply pick up a knife and make a peanut butter sandwich?  You see, I do sometimes serve my family packaged meals, not because I don’t know any better, or because I am short for time, but because it sometimes comes down to eating that or going hungry due to pain.  There are days when even having dinner at the dinner table is out of the question because of pain.

There are many compromises that you must make if you live with chronic pain that a currently abled bodied person does not have to consider. My family knows to ask at all times before they touch me, because some days a simple hug is excruciating. I turn down invitations from friends not because I don’t want to spend time with them, but that it would be to physically exhausting for me. 

You learn to say that you are fine when people ask you how you are, because they don’t really want to know or have the time and patience to understand. Even if we decide to explain, the quick nod of acknowledgement and the sudden shift of conversation lets us know that the topic isn’t really all that important, though the pain for us might be overwhelming. There is this expectation that we will be like the other disabled people that they see on television and suddenly get our dancing shoes on (how many healed paraplegics have you seen on television?).  Why aren’t we getting better, or finding an acceptable way around it so they can declare us courageous even as they move on?

When I go out on my scooter I see the looks as people register my fat body and assume that I ate myself into this condition, or make some ridiculous joke about getting run over while they jump 2 meters (yep metric in Canada) out of the way. What they do not see, is the struggle it took to get on that scooter and the pain I am in, even as I manoeuvre with it, just so that I can get some basic things done.  Pain is invisible and because people cannot see it and in fact cannot imagine it, they  create all kinds explanations (flights of fancy really) based on their privileges and biases about why you aren’t able to do something. 

I have been told how easy I have it and that I do not work, and yet a simple trip to the bathroom can cause me to have rest for five minutes before even contemplating doing anything else. I don’t care how much you hate getting up to the sound of an alarm clock, at least you can get up and get to a job that people recognize as work.  Even if I were to never write another word on this blog, just getting through my day is work because it means negotiating the pain.  Pain isn’t something that you can see, but to the person that is suffering with it, it is very real.  Disability isn’t always about what you can see (especially true since some are vision impaired), it is about the individual and the adaptations they are forced to make to negotiate this world.

The next time you see a differently abled person and you are tempted to make some sarcastic remark about switching with them in order to avoid some annoyance in your life, remember that it can come with more pain than you could possibly imagine.  Remember that it comes with ableism and cruelty.  Not working, and spending most of the day on the couch is not a permanent vacation, it is a survival mechanism because the body has gone into revolt.  So just keep wishing it, because one day it might all come true – being able bodied is temporary for us all and it is minimizing to assume that my pain would equal some sort of vacation from your stresses.