Why I Use a Handicapped Pass Even When I Don't Feel Terrible

I first asked my doctor to prescribe me a handicapped parking pass a little over 8 years ago.

Perhaps “ask” is not the right word. My brain was inflamed at the time and my communication skills were limited. “Stuck a random string of words and incoherent noises together and somehow came out of it with a prescription paper in my hand” is probably more accurate.

Lupus affected my ability to walk

My legs had stopped working a few weeks earlier along with my sense of balance, so my family pushed me in my wheelchair to doctor’s appointments. I was barely strong enough to make it to the bathroom in my own house. Just sitting in a wheelchair and talking to my doctor was so physically draining that I could only go to one doctor a week.

No one questioned my handicapped pass with my disability so visually obvious. With my face puffy from steroids, a hat covering my balding head, and a wheelchair, I met the stereotype of someone who needed to park in a handicapped spot.

I still needed the parking pass

As I got better, my face lost its puffiness and my hair started to grow back. My wheelchair gathered dust in the garage as I made my first tentative steps, literally and figuratively, out into the world.

I also started noticing the reactions of people who saw me park in the handicapped spot, hop out of my car, and walk into the store on fully functioning legs.

Did I feel sicker when my face was round and my head was bald? Not necessarily. There were many days before the flare when I looked perfectly normal but was so exhausted that I had to count every step.

When I first started walking after 6 months in bed, I would have placed last in a race against a turtle. Every day for a month, I would shuffle slowly from my bedroom down the hallway leading to the living room. When my legs started to shake from the exertion, I turned around and shuffled back to bed. Slowly, I got stronger. Five years later, I still marvel at the ease with which my legs lift from the floor and propel me forward.

My handicapped placard is more than just a parking pass

In the 12 years since my diagnosis, I haven’t lived a single day in which I got to forget that I have lupus. On bad days, all of my mental energy goes towards trying to feel better. On good days, I still have to put in work (in the form of exercise, healthy eating, and constantly monitoring my energy level) to stay that way.

With a disease that requires me to think about every little thing, every hour of every day, at least parking is one thing that I no longer have to think about.

My blue handicapped placard is more than just a parking pass. It’s a pass from having to think about every little movement and every little step. I don’t have to decide what activity I need to skip later because I spent my energy trekking across the Target parking lot. I can go to Target and shampoo my hair in one day!

I’ve been feeling well in general for the past several months. But that doesn’t mean that the little energy accountant who sits in my head and measures every movement is on vacation. She’s still there, just a little more relaxed. It’s now ok to walk across the parking lot. It’s ok to stay up past my bedtime once a week when I just have to finish the chapter. The occasional glass of wine won’t kill me.

But I know that can change at any moment. I could walk out of Target with my shampoo in hand and be struck by a bolt of fatigue with a side of general crappiness. Part of living with a chronic disease is knowing that anything can happen at any time. Wellness is not a guarantee.

Good thing my parking spot is.