My parking pass is a visible reminder of my invisible disability

My permanent disabled parking placard was falling apart, and after 10 years of use, it was held together with tape. So I went to the Department of Motor Vehicles to get a new one.

“I’m so sorry that it’s permanent,” replied the lady behind the service counter.

Her response shocked me. “Thank you,” I said as my eyes welled up with tears. “Nobody has ever said that or understood how hard this is.”

But this lady understood. She told me about her husband, who had amyotrophic lateral sclerosis (ALS), and how hard he fought to maintain his life until the end. About how harshly he was judged when he used his placard before he needed a wheelchair. Nobody knew what he was going through except his wife and family, she said. They saw it all. But to the outside, he looked perfectly fine.

This lady and I became instant friends in that moment. We exchanged a look that said we got each other on a soul level. Feeling seen in such a real way brought so much comfort to both of us.

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Parking pass

My disability is permanent, but it isn’t always evident. People who don’t know me might see someone who appears healthy. But they wouldn’t see that I have cystic fibrosis (CF), that I had a double-lung transplant eight years ago, that I struggle to gain weight, or that I am a diabetic. They wouldn’t know that my health record is large enough to fill several file cabinets.

I was in my mid-20s when my health started to decline and I required the intermittent use of supplemental oxygen. It took me a while to use my oxygen in public because I was embarrassed. I cared what people thought of me and didn’t want to be treated differently. But I had to swallow my pride to survive.

Before my lung transplant, having a disabled parking placard was a lifesaver. I could park close to where I needed to be without worrying about struggling to breathe in the wintry cold or becoming exhausted. Going to the hospital became easier, too, especially when I had to go several times a week because I was so sick.

Even though I have new lungs, my health isn’t perfect. Some days, I feel terrible, and on those days I still have to run errands, get groceries, and go to doctor appointments. Being able to park nearby is a big help.

On not getting a pass

I didn’t expect people to be mean to me because I had a disabled parking placard, though. I once got screamed at by someone before I had a chance to display it, demanding to know if I had one. Another time, when I was out with a friend, I got harassed about how I didn’t look handicapped and shouldn’t park in a space reserved for someone who actually might need it. If I had a dollar for every snarky comment or death stare, I’d be a millionaire.

It’s fascinating to me how some people set themselves up as gatekeepers who think they get to decide whose disability is real and whose isn’t. If they knew the truth, I bet they’d put their foot in their mouth.

I know I don’t need to explain myself to them, and I don’t have to answer to them. Someone’s wrong-headed ideas about me don’t determine the legitimacy of my disability. And it doesn’t give them the right to say whatever they want to me.

My disability may be invisible, but that doesn’t make it any less valid. But perhaps people should be reminded to never judge a book by its cover.

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.