I have been managing my chronic pain and taking care of myself for years. But taking care of myself requires the cooperation of other people, and that can be the most difficult challenge to overcome. I cannot take care of myself or be well if others do not take my pain seriously. Just because I was able to do X yesterday does not mean I can do it today. The pain comes and goes. Once it starts I have to let it take its course. But society caters to people who are able-bodied and physically strong. Illness and pain are not compatible with the typical pace of life, and I admit I have anxiety about falling behind.
Living with an invisible disability can be exhausting – not only because chronic, searing pain is energy-draining (in my case), but because it leaves behind no evidence. Communicating with others about my pain often leaves me feeling misunderstood and isolated. Sometimes I want to wear tops that reveal my scar all the time, in order to silently “prove” there’s a *real* reason I just want to lie down, can’t carry that ten pound box, or don’t want to stay out all night partying. I cannot shake the feeling that other people doubt me or believe I use chronic pain as an excuse to get out of doing certain things.
Without revealing too much, I do a fair amount of traveling for my job. It’s not something I enjoy. Air travel is physically distressing; the long hours spent sitting in uncomfortable chairs are agonizing. Last week I jerked and squirmed in pain during lunch with co-workers and business associates. After the dessert course I turned to my co-worker, S – who knows about my affliction and is extremely understanding – and told her I was about to break down and I’d be back in a few hours.
I made it upstairs to my hotel room before I burst into tears. S knocked on my door a few minutes later and I explained that I could not be there for any afternoon sessions. She promised to take care of it and said she’d tell [one of our bosses] what was up. I took a nap after struggling through the pain to fall asleep. Sometimes my body will restore itself after an extended period of rest. When I woke up I did feel better, though my body was worn out after it’s assault on itself. I managed to make it to the banquet that night, and had a good time. Still, I was nervous that my cross-country flight the next day would send my body into a tailspin once again.
And so it goes. I wish I did not have to travel at all, but I don’t want to lose my job entirely. Although she technically knows about my chronic pain, my boss acts oblivious. I would love to say to her, “I will not be flying coach anymore,” but I am not confident enough. I would love to demand an Aeron chair for my office. When I take a sick day due to pain I wonder whether my colleagues think I’m a poor worker. Do people think I am a slacker for not going to business dinners after eight hour workdays? Even though I have been advocating for myself with medical professionals for years, I struggle to make sure my needs are met in other aspect of my life.
So, I guess I want this to be a reminder that just because a person does not “look sick” does not mean they are healthy or physically robust. If anyone reading has dealt with this sort of thing and had success advocating for themselves in the public world, I’d love to hear from you in comments.