"But That's Not a Disability"

I just had the most frustrating conversation with someone at my doctor's office. I had sent the paperwork to renew my disabled parking tag, which I use because my arthritis makes it difficult for me to walk long distances (and sometimes even short distances), especially when there are children and a bag of groceries involved. It took me several years of being ill before I finally gave in an applied for one. My mom finally convinced me, and thank goodness -- because now, that tag is the difference between me being able to stop and grab a gallon on milk and a bag of apples on my way home, or being able to take the kids to the doctor by myself, or being able to mail something from the post office, and not.

Anyway, the nurse called and asked, "But what's your disability?" I replied, quoting my rheumatologist, "Severe inflammatory arthritis" (this was also explained in the cover letter I sent to accompany the application, but apparently she did not read that).

And she said, "But that's not a disability."


Obviously, she doesn't have severe inflammatory arthritis.

So, I then had to begin my campaign of convincing the nurse at my own doctor's office that I did, indeed, need a disabled parking tag. And I was really mad! I mean really mad! And I'm sure there was an edge in my voice when, in answer to her question, "Well, do you fall down a lot or something?" I said, "Well, do I fall a lot? No. I don't fall a lot. But I can be walking, and my hip will freeze up. And then I can't move. So, if I'm in the middle of the parking lot, and my hip freezes up, will I fall? Maybe not. But I might have to sit down and hope that my hip unfreezes. Meanwhile, if I have my three-year old with me, it's a problem." Well, she said, "Do you walk with a cane?" "No," I said, "but when I'm really bad, I either don't go out or I don't walk at all -- my husband drops me off at the door and then pushes me in a wheel chair." So went the conversation, back and forth, back and forth. After a while she said, "Look, Ma'am, I'm just trying to fill the form out here." And I said, "And I'm not trying to be difficult, but I need this tag and I don't want to have to convince you of that."

I don't really like having to use a disabled tag. I don't like it at all. I don't like the Raised Eyebrows and Looks I get from people who look at me and think I am cheating the system by having a disabled tag, because unless you look closely for my slowish, half-limping gait, you might look at me and think I am perfectly healthy. I wish I could sprint and do cartwheels through the parking lot while juggling my kids in the air behind my back. But the truth is, I can't, and I need that tag to make my illness manageable, my life more livable.

After we hung up, I felt like crying. Sometimes I get really tired of constantly having to convince, argue, fight, and advocate for myself because I have a chronic illness. Sometimes I feel like not a week goes by when I am not trying to convince someone -- a doctor, a nurse, an appointment secretary, an insurance company representative -- to give me what I need to feel as well as possible. And I guess I wish I could handle situations like this with perfect calm, without ever getting frustrated, without an edge in my voice. But, what can I say? So far, I can't.

And today, Reader, I can't even come up with a silver lining for this cloudy story. Because today it's damp and rainy and I'm sore, and I used my disabled parking tag when I stopped at the co-op to pick-up my special order bread. And I needed it, I really, really did.


Gretchen said...

I'm glad you have your parents to help you out and encourage you when you need it! Ah, there's a possible silver lining for this story. =) Sometimes moms DO have good ideas. (Now try to convince your kids of that!)

CitricSugar said...

My favourite aunt ( a retired nurse) is losing strength and mobility in her hands and I've watched her slowly surrender things she used to enjoy. Luckily, it hasn't affected her legs or her ability to walk.

I'm angry at the nurse (medical professional) who harassed you over something your doctor had already okayed. I'm sure my aunt would've let her know how incredible tactless and likely to undermine well-being her thoughtless arguments were.

If anyone who reads this post of yours is anyway influenced to think differently towards chronic illness or things that may seem minor in their own spheres and helps them realize what can be taken for granted or what "minor" thing can become completely debilitating, then you've got more of a silver lining than you thought.

Ms. W-K said...

Your silver lining is your strength to tell your story. Hang in there, friend. If I was there, I would carry you (and maybe flip off the nurse at the doc's office... just maybe).

Molly Spencer said...

Thank you, everyone, for helping me to see the silver linings in my cloudy story.