When I was a girl, and I couldn’t ignore the physical pain any longer, dismissed as attention seeking child that was too young to feel that way. It’s growing pains; it will pass. When my family would go on Volksmarches, I learned to cope by giving myself markers “I have to make it to the end of this fence. If I focus on my feet, I won’t realize how far I have left to go.” I was 10, and to this day I find those markers. Just get through this twinge of pain, make it to the end of this day. Modify and adapt.
It is almost impossible to gauge the pain. The number scale with zero is no pain, and ten is unbearable. A 9 on the scale for one person may be my 4, even though the pain is nearly the same. Pain is whatever the patient says it is, along with other physiological and psychological reasons that influence perception – that is what makes treatment of chronic pain so difficult. Pain leads a life of its own. Evidence suggests that over time untreated pain eventually rewrites the central nervous system, causing pathological changes to the brain and spinal cord and that these, in turn, create more significant pain. Even more disturbingly, recent evidence suggests that prolonged pain damages parts of the brain, including those involved in cognition. Scans have revealed that chronic pain had dramatically reduced gray matter; normal aging causes gray matter to atrophy by half a percent a year. The gray matter of chronic pain patients atrophy dramatically faster: the pain patients showed losses amounting to between 5 and 11 percent, that is like ten to twenty years of aging.
There is no way to manage chronic pain but only to COPE with it. Managing implies that we can control the pain — chronic means long-lasting with no end. There is no pill, method, diet or magical potion that allows us to live the way we used to. There is no cure; it will never go away, you can learn to cope and adapt to it. The strength to get out of bed, the power to face another day is an accomplishment, even if you don’t believe it. You can OWN your struggle. There is nothing I can do to cure the pain, and when I am in a severe flare, I try to hang on until it ebbs for a while. Knowing the flow of pain will return I try to take the lesser pain days with enthusiasm and try to make the most of that day.
What does it look like to be sick? Some tend to believe that to be SICK we have to look like we are on death’s doorstep. That is utter bullshit. There are so many illnesses that have no visible signs. If I don’t look sick, if I have a little make-up on and a smile it doesn’t make my illness less real, it just means that I have become a master at hiding it. Telling someone they don’t look sick is not a compliment, it is aggression. What you’re saying, whether you know it or not, is “I don’t believe you.” If you want to compliment someone with chronic illness start with something you genuinely like – their hair, their outfit, that funky bag or whatever. Just don’t tell them that they don’t look sick.
Looking like you are not in pain is just something we have adapted to – why? Not to make us more likely to fit, but for me at least, putting myself together the best I can is for me and me alone. I hate looking in the mirror and only seeing my disease. How my pain is showing up on my face, you would never tell someone with cancer that they don’t look sick. You would never judge them if they were having a good day. You wouldn’t judge them for not looking ill enough. You wouldn’t assume much at all. So stop believing that people with chronic illnesses don’t look sick enough. You can also come to understand that the comments and “helpful” advice are not about you. It is about that person. Their fear that this too could happen to them. Their ignorance. Their ill manners. Not YOURS.
I am proud of all of you. Whether you made it to the top of the mountain – finished a load of laundry – all the above, none of it at all, and everything in between. You are not LESS than in any way, and you are not alone.