Reconciling what I know about my disability status with how I feel
As her abilities evolve, a columnist can't help but wonder, 'Am I still disabled?'
“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.
Am I still disabled?
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.
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.
About the Author
Comments
Ruth Case
I am very fortunate with my level of disease. I'm 75 and I primarily had symptoms after all of my pregnancies. I have never taken any medication except aspirin for symptoms I developed after my pregnancies. I had diffuse erythema nodosum with some lung issues. Initially nothing showed up in my lungs but after my third pregnancy I had areas of opacities. These opacities resolved on their own once I stopped breast feeding. My doctor's have never wanted to treat my sarcoidosis. But I have several lung inhalers that I only use if I have had exposure to something I'm allergic too. In fact on my last physical my doctor said she hopes she is as healthy as I am when she is my age.
🦋 Kerry Wong
Oh, Ruth, I'm so glad to know that you're doing so well with this disease, though it may be something that always remains in the back of your mind. We need people sharing stories like yours in our community, too!
Stay well!
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Julia
Love this article. Your thoughts and feelings are quite similar to my own. It helps to read articles such as these because at times you think you’re the only one that thinks that way. I was diagnosed 21 years ago and I’m still fighting. Pretty much everyday is a challenge, my husband and immediate family understand. After all this time, I found a Dr. that is treating me with different protocols than that of my pulmonologist. Feeling better but will always have my limitations because of the damage it’s done to my lungs over all the years. His Bless and I pray for the Dr’s courageous enough to step outside the box to treat those that are battling this.
🦋 Kerry Wong
That is definitely a fine line we walk on, Julia - wanting to be grateful for the improvements without discounting the challenges that we still have. Sometimes it takes seeing stories like yours to know that "out of the box" even exists, so I am glad you have found that, and grateful that you've shared it here. We're all in this together!
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Jaclynn
After 3 appeals, myDoctor was able to get the medical judge at Medicare to reverse my insurance companies denial of my Humira. It took awhile but our perseverance paid off! Don’t give up when your insurance company says no. Ask for a medical judge review.
🦋 Kerry Wong
You're so right, Jaclynn! Whether it's a particular treatment, a diagnostic test, or Social Security Disability, it can be an incredibly frustrating (and long) process. Many don't know that they even have the option to appeal, so thank you for mentioning it here!
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