Living With . . .

I May Look Healthy, but I'm Not

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Tuesday, November 4, 2008

I was with yet another health care professional the other day who was removing an interesting contraption from my legs and feet. We discussed my insurance coverage (or lack thereof) and their willingness to be very flexible with me. It was then that I mentioned that I was on disability.

She said, "Why can't you work?" I tried to explain that I have to take a lot of pain medications that cause extreme drowsiness and impair my thought process and memory. But it didn't come out like that.

The truth is, I have an invisible disability called idiopathic neuropathy. If it weren't for the cane I sometimes use for balance, most people wouldn't know there was anything wrong with me. I make very planned appearances, not too many during a week.

I don't like for people to see me "down," so I try to bite the bullet or suck it up. But that makes the disability more invisible. The thing is, I liked my job: my own business, built from scratch; we had just painted my office and put in new carpet. I never got to add the logo to the wall. . . .

Why can't I work? I tried to keep up for several years. The business suffered, and so did I. But I still don't really know how to answer that question. Please don't judge me by the way I look on the outside, because I try so hard to appear normal and healthy. Just try to understand.

Dianne Pruim of Holland, Mich.

It hasn't slowed me down, I just use different modes of transportation.

I was diagnosed with MS in 1991 and have progressed from cane to scooter. I use a wheelchair to travel, but I am grateful to live in a modern age in which technology allows me to get around by myself. I have a van outfitted with hand controls and a hydraulic ramp. I benefit from handicapped parking spaces and those square blue buttons outside doors.

I am weak, I fatigue easily and I turn to lead in the heat. Over the years, I have learned to ask for more help, but I am still determined to live independently. I am a writer, grateful to live with e-mail and the Internet. Information and communication at my fingertips makes up for my lack of manual dexterity. At http://www.quigleyscabinet.blogspot.com, I weave together chronicles of my peculiar life with my research interests -- in death and anatomy. Being cheerful by nature and morbid by inclination is much better than being morbid about my own health!

Christine Quigley of Alexandria

If you have a story about living with chronic illness that you would like to share, send it tohealth@washpost.com. Include your postal address and phone number and mark the subject line "Living With." No more than 250 words.


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