Well-intentioned but ignorant people can be so cruel.
One of the biggest challenges of MS is the “invisible” symptoms. People don’t see what’s causing them, people don’t understand them, but it’s amazing how much they think they know about how to fix them.
Take spasticity, the muscle stiffness and spasms that can cause your leg to lock. It’s not uncommon for me to try and bend my knee for my leg to instead make my leg straighten out and not budge. In the winter edition of Momentum, the magazine distributed by the National MS Society, neurology professor Bruce Cohen explains that spasticity is caused by spinal cord damage. The common recommendation is to alleviate the pain and stiffness of spasticity is to exercise through stretching. I’ve worked with a physical therapist (who has a doctorate) to develop a stretching and strengthening routine that I need to follow regularly. This physical therapist (did I mention she has a doctorate?) has done presentations on MS exercise programs in which she emphasized the importance of strengthening, stretching, balance, and cardio exercise.
It’s amazing to me the layman response I’ve gotten from people close to me regarding my spasticity. I made the mistake of telling my family that my neurologist wants me to exercise more. Their response has been to hound me for not spending enough time at the neighborhood fitness center and get on the elliptical machine. When I tell them I need to adopt a stretching program, they tell me “that’s not what your neurologist meant when he said exercise”. Some of their other comments:
– “You bend your knee some of the time. What are you doing differently, thinking about it?
– “You need to go down to the fitness center and work with those trainers there. They’ll know what you need to do.” (Have I mentioned that I’ve worked with a physical therapist who has a doctorate?)
– “You need to start exercising regularly before you become a cripple.”
– “All it takes is some willpower.” (Would they tell that to someone in a wheelchair?)
– “Stretching’s not going to do anything for you.” (Yup. All of those neurologists and physical therapists are wrong.)
I try not to let their comments get to me – after all, they do mean well. But their ignorance hurts. Deeply. It’s hard enough to stay motivated through the setbacks and the pain and the personal battles. But when the people you love – and who love you – are saying such hurtful things, it’s tough to deal with it. These people are supposed to be supporting you, and truly think that they are supporting you, but instead they’re throwing up even more roadblocks.
