DEAR CAROLYN: Six years ago, I suddenly lost feeling in my fingers and toes and had neuropathic pain that was debilitating and stopped me from working. We were able to figure out what the disease was and I mostly recovered. I still have pain/muscle weakness in my feet when I walk too much. I'm in my early 30s now but cannot go to the grocery store, concerts or museums because of how much walking they take and the pain that results. Some suggest I use a wheelchair for these but I feel like if I do it's a lie. I'm physically able to walk, it just results in pain, and thus I feel like a fake if I'm in a wheelchair. I now avoid anything that results in walking, and thus I've gotten mad at life for handing me these circumstances that keep me from doing normal things. I've asked my family/friends if I'm a fake if I use a wheelchair without NEEDING it, but I feel like they are all biased from dealing with the fallout of me walking too much (miserable, in pain, unable to do daily activities for the subsequent days/weeks) and so I'm writing to you. I think part of my issue is that I look able-bodied and so I worry about being judged, or getting sympathy I don't deserve. I feel like a wheelchair should be reserved for those truly disabled. What's your opinion?
INVISIBLE DISABILITY: My opinion is that our tough-it-out, I'll-do-anything-to-avoid-being-judged culture has become a kind of collective insanity.
Use whatever medical devices you require to participate fully in life. The end.
I'm glad you're doing better. Now, please, just start doing.
RE: INVISIBLE: The human mind is incredible at rationalizing. It's really, really common for disabled people to think they're not disabled, or disabled enough, even when the average sensible person would read their symptoms and understand that yes, this person is experiencing something truly debilitating.
Debilitating pain is a disability. On top of that, your brain is lying to you about it. Please stop beating yourself up for not looking like Tiny Tim.
RE: INVISIBLE: I have peripheral neuropathy and can't walk any distance. Instead of a wheelchair, consider a mobility scooter. People don't "look at you funny" when you get off a scooter and walk short distances as they might if you use a wheelchair. Also, you have my deepest sympathy. People just don't understand.
I Am You
RE: INVISIBLE: Military veteran here. In my experience, rarely do veterans park in the "reserved for veterans" spaces because they always think there's someone "more veteran" or deserving than they are. You say in your letter "I've gotten mad at life for handing me these circumstances that keep me from doing normal things," but your whole letter is about how you could do normal things if you just used a wheelchair. So life isn't keeping you from doing them, you are.
All that is to say if you look hard enough, you can find someone who needs a wheelchair more than you, but that doesn't mean you don't need it. Will people judge you? Not the decent ones.
VETERAN: So well said, thank you.