When Friends Think I Live the Easy Life but Are Unaware of My Disability
“People would love to have your schedule,” my friend said when I told him I would be increasing my swimming to four days a week. What was left unsaid in his comment and my internal reaction covered my invisible world of disability. How often have I wondered whether others understood how I must manage every hour of every day to minimize stress in order to minimize my symptoms?
I know why I live my life the way I do. If I manage my life very well, no one sees my disability, other than my neurologist.
I swim because it calms me down. I swim because it helps me coordinate my movements. Without swimming, generalized dystonia makes my limbs and torso move with a mind of their own. I don’t want friends to see my body moving beyond my control. I have never gotten over the shame of those close to me seeing what my body is like without exercise and medication. I feel ugly. So I swim.
I wanted to scream, “You don’t understand! My life is not all rainbows and vacation, rest and relaxation!”
I wanted to say, “Do you think it’s fun having to stop work and live on limited resources? I used to go on vacation. I love to travel. I don’t know if I will ever be able to do that again.
Do you know what it is like when your life changes overnight from a full, active life to being bedridden, losing your home to foreclosure, losing your job and friends, losing your livelihood and waiting two years for disability and not knowing how your symptoms will develop? Wondering if you would lose your ability to walk?”
In a split second, all of these thoughts went through my head, as well as a confirmation of my assumption that others think I have found the easy life.
Yes, I now have time to volunteer and time to spend with my parents.
Yes, for the first time in many years, I sleep enough and exercise.
But I doubt if he knew my schedule, he would love it. It’s frustrating to have to wait for my brain to be in the right place in order to fill out forms. When I am tired, which is every day, it’s difficult to work my way through a form. Some days, fatigue pulls at me moment by moment. I must push it away continuously to keep from spending my hours in bed. Buying groceries and cooking meals is overwhelming physically and mentally much of the time. I have to keep my menus simple and hope I can eat right.
I feel like a vulnerable adult. When everyday stress becomes too much for my brain, my symptoms lock me in contortions, and it’s physically easier for me to accept injustice than to fight it. Fighting injustice means opening myself to my writhing movements. If I chose to fight, I chose to take energy from the activities that make me well. Will I be able to take care of myself? Will others be able to walk over me because I can’t fight for myself sometimes? My friend didn’t and can’t see these daily struggles.
The best I could do the moment he made the comment was to let him know that swimming is my physical therapy and the more I do, the better I function. I need to swim for my health. He understood, but how do I convey that living with a disability is not an enviable schedule?
September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.