When You Don't Feel 'Disabled Enough' to Deserve Help
“Would you like to have a seat?” Apparently this person was speaking to me. It took me a moment to register why they were asking if I wanted a seat when there were a dozen other people standing and watching the live performance with me. I looked down and saw my cane, and then it clicked. “Oh, they think I’m disabled and can’t stand. I’m not really that disabled. Other people probably need to sit more than I do. The reason I brought the cane was to help me stand anyway.” All those thoughts ran through my head. I’ve convinced myself that my cane is a prop to make my invisible illness more visible, instead of accepting that I really do need to use it.
It started when I was taking public transit. I saw people sitting in the disabled seats who appeared to not have a disability, while I was left standing. I was so tempted to say something like, “Excuse me, if you do not have a disability then would you mind letting me sit there because I do have one?” but I couldn’t muster up the courage. Instead I just shifted my weight back and forth on my feet – feet that ached as if I had worked a 12-hour shift running around at an amusement park – and tried to ignore the pain in my joints and the chronic fatigue that was begging me to just lay on the floor for the remaining 45 minutes. By the time the train reached my station, I had to brace myself against the wall and sit down to catch my breath before proceeding to walk to my destination. I really did need a seat then, and this time was no exception.
I have fibromyalgia, but I’ve always secretly thought I might not really have it and even if I do, it’s not that bad compared to other people. My mom has fibromyalgia and her pain is everywhere. She can barely move and when she does, she constantly moans out in pain. That’s not me. Sure, I have aches and pains, chronic migraines, and possibly some nerve damage, but I mean it’s not that bad, right? I’ve managed this long. But it irked me that I could have used the disabled seating and yet I didn’t have the courage to ask.
Knowing that I would equally look like I don’t belong in those seats, I thought using a cane would help show that I do have a disability and I do have a right to sit there even though I may be young and look healthy otherwise. I tried this and it worked. It was such a huge relief. But then I noticed something else: the cane actually helped me! If I couldn’t find a seat, at least I had this cane to lean on and when I walked it could ease some of the pain in my joints. I talked to my doctor about this and she agreed I should use it, which helped validate my feelings. I still don’t think I need it, but it definitely does help.
So why is it so hard to accept help? This nice person saw I might be struggling and offered to help, but I declined. The truth is I really was struggling to stand and did want to sit, but I didn’t feel worthy and I didn’t want to make a scene. I was used to feeling that type of discomfort and I could manage just like I always do. Except I didn’t have to suffer this time, but I chose to anyway. It’s as if I’ve invalidated myself so much that even though I can say “I have a disability,” I have a hard time when I realize strangers view me as being disabled and just as worthy to receive special accommodations as anyone else with a disability. As the night wore on and other seats opened up, I finally was able to sit and rest. When it was time to stand back up again, I ached so bad to stand that I swore to myself I would not decline a seat ever again.
I know I’m not alone in feeling “not disabled enough.” It’s tough when there are so many disabling conditions out there and we constantly compare ourselves to each other, never thinking that our condition warrants some extra help every now and then to make our lives easier. So for all of you who struggle to feel that your disability is valid, I say to you:
You are enough. You are “disabled enough.” Your disability is legitimate. Your doctor recognizes this, so you should too. Why struggle when someone reaches out a helping hand? Accept the assistance graciously and appreciate the moment of pain relief you get because of it. You deserve it just as much as anyone else. You are worthy.
Getty image by Gyro.