Reconciling what I know about my disability status with how I feel

[Joachim]

“Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” — Anonymous

Every other week before I meet with my therapist, I take stock of where my head is at: what I’m thinking most about, what’s stressing me out, and what’s calming me down. Sometimes the list feels endless; other times, I can’t think of anything to say. Usually, though, it’s some version of me trying to reconcile what I know with what I feel.

It amazes me: They’re only about a foot and a half apart, but my head and my heart can see things so differently.

This time around, I was focused on my new hip. After years on steroids for sarcoidosis and arthritis, I developed severe osteoarthritis and avascular necrosis, eventually making it nearly impossible to walk unassisted. (I wish the universe could recognize the irony there.) But since my total hip replacement in June, the difference has been life-changing.

In just the past few weeks, I’ve gone from needing a walker to using a cane, to walking around my apartment with no aid at all. But as I think about the plans I have over the next few months, which include a three-day arthritis advocacy conference in Washington, D.C., culminating in a day of meetings on Capitol Hill, and a trip to Puerto Rico (a do-over after breaking my foot there last year), I know I’ll still need my mobility scooter.

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I’m having a hard time wrapping my head around that dichotomy. It’s as though the word “disabled” has taken on a new meaning that I don’t quite understand. If I’m able to walk without an assistive device, does that mean I’m not disabled anymore? But if that’s the case, then I shouldn’t need my accessible parking permit or my mobility scooter, either, right?

But even with my good hip, I still get short of breath quickly, and my fatigue alone can be debilitating. I know I need the scooter for longer distances, but it feels like I shouldn’t. I always thought there was a natural progression for accessibility devices: a cane for support, then a walker, and finally a scooter or wheelchair when I need even more help. So how can I skip one and two but still need three?

I’ve read so many stories from disabled friends and advocates about the awful things they’ve been told, usually questioning the validity of their disability. So when I use my accessible parking permit, I worry that people are looking to see if I really need it. When I get out of my car with a cane or walker, it’s clear that I do. But if I’m able to get out of my car and walk unassisted to my destination (most often a medical office), then it feels like I should leave that spot for someone who really needs it — even though I know that I do.

It often feels like I have to justify everything: my need for that parking permit, my accessibility aids, my weight, my unemployment, my exhaustion, my canceled plans, but also my kept plans, my occasional good days, and even my progress. How can I say I’m not well enough to go somewhere on Sunday, but feel OK to go on Monday? Why can’t I get a job working from home? Why don’t I just exercise and lose weight? Why? Why? Why?

The real question in all of that, though, is, “Justify it to whom?” My therapist asked who it is that I feel is judging me, and it didn’t take long for me to answer: “Nobody that matters.” It’s not my husband or my mom, or my friends and family who care about me — even if it sometimes feels like the whole world is judging me. I realize it’s my own voice that questions me so harshly, and I don’t deserve that.

As for the question of disability, I know it’s not as simple as whether or not I use a cane. Disability can be physical, developmental, or intellectual; it can result from illness, injury, trauma, or genetics; it can be visible or invisible, temporary or permanent; it can fluctuate from day to day or hour to hour. And while I did have to explain it in order to receive Social Security Disability Insurance, and still occasionally need to do so in order to receive accommodations, I know I don’t have to justify or explain it to anyone else. All I have to do is be who I am, say what I feel, and do what I know is best for me and my health.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

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