When I Realized I Was Prioritizing My Fear of Using a Wheelchair Over My Health

It was late. The sun had already set and the rain had been steadily falling all day. I was sitting with my boyfriend in his car, trying to suppress my anxiety and panic about doing something I had never done before: Use a wheelchair in a grocery store.

In the past, before I knew that all of my symptoms were due to a genetic connective tissue disorder called Ehlers-Danlos syndrome and its comorbid BFF, postural orthostatic tachycardia syndrome (POTS), I thought my struggles with grocery shopping occurred just because I was out of shape, or hungry, or maybe dehydrated. I was convinced that those were the only possible reasons I could be sweaty and dizzy from five minutes of walking around. It wasn’t until I was diagnosed that I realized these odd feelings I’d had all my life had a rhyme, reason, and most importantly, a name.

Cut to that stormy night, debating in my mind if I should actually use the wheelchair. I had never really considered it before – I could always rush in and out and it wouldn’t be fun, but it was doable. This night, however, there would be no rushing in and out without serious consequences.

The day before, I got so dizzy and hot at work that I stumbled into the break room as I tried to quickly consume over 1000 milligrams of salt in the form of cup ramen, to help with my POTS. I felt my body trying to shut off as I shakily plugged in the kettle and laid my head on the table waiting for the water to boil. The ramen got me through the rest of work, even thought I was exhausted and freezing until I got home and into the bath – but I was shaken and not prepared to take care of myself. I needed salt and hydration in the form of gatorade, pretzel rods, salami, bagels, more ramen and jerky. I needed them while I waited for my Saltstick tablets to arrive the mail.

The next day I waited until my boyfriend got home from work and could drive me to the store. I was too afraid to go out on my own to do the shopping for fear of passing out by myself in public. As we sat in the car, pulling up our hoods and preparing to walk through the rain, he turned to me and asked, “Can you actually do this? Will you be OK?” I wanted to say yes. I could force myself, walk in and get dizzy, but move fast and not be fine, but maybe get out of it OK. Instead I said, “Honestly I don’t know. Could you maybe push me around the in one of Kroger’s wheelchairs?” And of course, he said yes.

Even with his support, and the fact that he wouldn’t let me get out of it after having asked him, I still spent the entire walk up the front doors thinking of ways I could legitimately chicken out. Maybe I could tell him I didn’t actually feel that bad. Or maybe the wheelchairs would all be in use and I could wiggle out of it that way. I thought about how I should have brought my cane so people could see that I needed the wheelchair. Or what I would do if someone told me I couldn’t use it or asked why I needed it. One of my biggest fears about using a grocery store wheelchair was a manager coming up to me and telling me I couldn’t be “messing around” on them because they were for people with real disabilities. I didn’t ever want to explain to a store manager that I did in fact have a real disability, even if they couldn’t see it. That quick walk up revealed to me that I was more afraid of what people might say to me than my body shutting down in front of the deli.

But there it sat, right inside the front door, with no one around to stop me or ask me questions. I stopped thinking about the cons of using it after the startling realization that I was prioritizing my fear over my health. I wasn’t being fair to myself, or my partner who I loved grocery shopping with so very much. I decided my health and myself was worth the trouble, flipped the basket up and just sat down.

I thought I would be anxious. I thought I would spend the entire trip watching everyone watch me and not enjoying myself. Instead, I had a great time with my partner without having to worry about getting dizzy or being in pain. The point of using a wheelchair wasn’t to make me uncomfortable, its literally the opposite. It was there to allow me to shop without pain and worry. I thought the cons I had created in my head would prevent me from enjoying the pros of using the chair. When in fact, the pros were so wonderful it made me completely forget that the cons had ever existed in the first place.

My partner used to always complain that he didn’t have enough time to look at foods he wanted before I was shepherding us out of the store complaining about my ankles and feet, my knees, my hips, being lightheaded, or all of the above. The chair solved the problems of my physical discomfort, as well as his problem of not being able to peruse the food. We could get deli cut salmi because waiting for it to be cut wasn’t an issue anymore. We had the luxury to go down every aisle, and because we had no reason to rush we didn’t forget a single thing on our list. Sometimes he would lean down and kiss the top of my head, or reach down and bop the hair I had piled up into a bun, all while talking and laughing and rolling down the aisles.

There is an idea I saw on twitter that grocery shopping with someone is a form of intimacy. Not only is this idea true, but by allowing myself to use the chair, I was able to enjoy that specific form of intimacy with my partner in a way I hadn’t ever experienced before: worry-free.

I wanted to share my experience specifically for other people like me, the people who use up so many spoons doing something difficult because they’re afraid of what someone might say. The people who might think “I am not ill enough” or “if I don’t need a wheelchair to get into the store, I shouldn’t be using it at all.” I can’t say anything to you about yourself and your health that you don’t already know, and I don’t want to say “remember to take care of yourself,” because honestly I’m always trying to do that and I know from experience that being reminded doesn’t help much. I just hope that if you’re like me, maybe you’ll stop pushing yourself too hard, and let someone else lovingly push you around for a change.

Getty Image by yacobchuk