Steven Spuds, on Living with Peripheral Neuropathy
With no way to "fix" his peripheral neuropathy pain, learning he wasn't alone in his struggle has helped him cope.
Steven Spuds, age 55
When were you diagnosed with peripheral neuropathy?
After a year of different doctors and hundreds of tests, I was diagnosed with chronic inflammatory demyelinating polyneuropathy in 2005. I thought, "Good, let's fix it so that I can move on with my life!!" But, I came to realize there is no "fixing" it. And with that came the depression, frustration, and isolation of being afflicted with an invisible but painful disease that limits my mobility. I promised myself, "I will beat this disease." Well, I'm guilty of being somewhat of a politician, because I haven't been able to keep my promises.
How do you manage your condition?
I have learned to live with it. I've found many different assistive devices to help get me through, and my knowledge of the disease has helped me to educate others. Four years ago, I teamed up with the Neuropathy Association in starting a support group in New York City. I have found strength by helping other people with peripheral neuropathy—and from knowing that I'm not alone. In fact, there are over 20 million of us.