But You Look So Good!’ — Challenges Of Invisible Disability
I am a person with permanent disablity, and until there is a cure for multiple sclerosis (MS) or narcolepsy, disability I shall remain. Yet, if you just glanced my way, you would see nothing out of the ordinary. In fact, I appear quite healthy. Just the other day, someone walked over to me and while pointing at my leg asked, “How are you recovering?” At first, I was completely puzzled. Then I realized that my limp and use of a cane made him believe I had sustained a simple injury. Trying to convey to others not to believe their eyes is frustrating and, at times, demoralizing. But with practice and the right attitude, the challenges can be less stressful and even empowering as you go through life.
If Looks Could Kill . . .
It was a little more than 10 years ago that my physician strongly suggested that I apply for handicapped parking. Although I knew he was correct, actually using a placard with the words “permanently disabled” was quite difficult to accept. Over time, we have learned to appreciate its many benefits. Wider spots allow for simpler entry and exit with mobility aids. Closer parking conserves energy, keeps us cooler, and helps us to safely navigate congested locations.Unfortunately, using handicapped parking can be quite stressful when you don’t look person with disability. Sure, I use a mobility aid, but in a pinch a shopping cart is similar to a rolling walker and I always have a folding cane with me. We only take a handicapped spot when truly needed, yet continually receive incredulous looks and occasional confrontations from people who believe I am “stealing” a spot from a truly person with disabilty.
Getting Others to Feel Your Pain
The sensation of pain is our body’s way to protect us from danger, as it elicits a response that we cannot ignore. MS can upset the complex balance in our nervous system, resulting in an unending cycle of pain. This cycle began early in the course of my MS. Attempting to squash the discomfort, I consulted a physician who incorrectly stated, “…MS is lack of sensation, so by definition MS surely does not cause pain”!It took quite some time to find the correct medical team that understands and supports my fight against the many symptoms of MS. They are truly cherished.