Whenever I am scrolling through chronic illness forums online, I usually come across posts about mobility aids. Having postural orthostatic tachycardia syndrome, or POTS, I understand what it feels like to use mobility aids in public without an obvious physical disability.
“But you don’t look sick”
“Are you taking this for your grandmother?”
“You don’t need that– it’s only a ten minute walk”
“Really? We will just be popping into the grocery store for five minutes”
“You need to learn how to cope with life without mobility aides” are some of the things I have heard people say about my use of a rollator.
If I gave a single sh** about what people think of me when they see me use a mobility aid with an invisible illness at the age of 24 in public, I would probably shy away from using them. But luckily, I know my limits and I’m not about to test them every time I go out just to make others feel more comfortable.
No, I don’t have a physical problem with my legs, so the rollator is not used to help me walk around the store. If you are confused by this, don’t worry, invisible illnesses are incredibly strange at times and at first I thought, this seems crazy! But, the secret is, a rollator is the best emergency seat you will ever have.
If you have POTS like me, you understand the sense of doom you get when you walk to the checkout line at the grocery store and the line is massive or something with the cash register goes wrong and you are left standing for 10-20 minutes. If you have hit your vertical limit, you know that the longer you stand there, the higher your heart rate will go, and the sooner you will need to find a seat.
I understand how you may not want to get stares, but is it really worth the risk of actually collapsing in the store? I remember a time when I was at a Harris Teeter and I could feel myself starting to shut down. I was beginning to see stars and my body started shaking. I knew I needed a seat and I needed a seat fast. But, this particular Harris Teeter only had ONE seat in the entire store! I successfully made it because of a crazy presyncopal run to safety, but I could have just as easily not made it and ended up on the floor of the store. Wouldn’t that be even MORE of a scene than just using a mobility aid?
I am all for pushing my limits to help fuel adaptation with POTS. If you follow the Levine Protocol, you will see that that method can work. But, I only have a limited amount of energy and verticalness per day and I would much rather use that actually doing the Levine Protocol, versus POTSing myself out just trying to get sweet potatoes.
I’ve also definitely appreciated having my rollator for alternative uses. When going to doctors appointments in large hospitals, your partner can push you for a bit while you sit on the rollator so you don’t get too tired out. You can even use the bags under the seat to store heavy water bottles and snacks for long days! If you are doing an outdoor activity, there are even these awesome foldable stools you can use where rollators cannot easily go.
So who cares what people think?!? If I don’t care what I look like to others, why should they? My grandmother refuses to use her rollator because she says she doesn’t want to feel disabled. I remind her that she is 80 years old, has a rod keeping her femur in place, and can’t walk easily. It’s going to be OK if people see her using a rollator. Yet she refuses to use it and sticks to her cane, so guess what? Another free rollator for me.
I don’t mind being seen as disabled because… I am? I am not ashamed of it and I sure won’t let that image get in the way of me living my life to the fullest I can despite having POTS. Maybe I have this mind-set because my best friend growing up had spinal bifida and I didn’t even notice her wheelchair until I was at least 10 years old. She never apologized for having a disability and never let the image keep her from doing what she loved. So for me, I never noticed that anything was “wrong” or “embarrassing” with her. She was just Karly, my best friend. And that’s how I expect everyone should treat me when I pull out my rollator from the trunk.
If you have an invisible illness and are too worried or embarrassed about using a mobility aid to get through your day easier, STOP! It’s your life! Why should we allow society to dictate how we live our lives? It is not our job to make someone else feel more comfortable with how we are seen in public. If you had a broken leg and had to use a wheelchair or crutches, people wouldn’t think twice about it. So why should it be any different just because our physical limitations aren’t obvious at first glance? Whatever the reason you would feel a mobility aid would help you, rock it!