March 22, 2023
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Photography by Ibex.media/Stocksy United
If you’re asking if you need a mobility aid, chances are you do. Understand your options, how to navigate stigma, and how to know if you “really” need a mobility aid.
One Friday morning last spring, on a day when I had plans to go out with friends, I woke up unable to move my legs.
For someone who is in her 20s, this happens to me more often than I’d like. My legs are often numb and heavy, with tingling, burning pain. As you can imagine, this makes it difficult to walk. The more physical activity I do, the worse my legs get.
My legs got marginally better as the morning went on. But I was still struggling to hold my own weight. I went back and forth with myself: Should I cancel the plans I’ve been looking forward to, or is it worth using a mobility aid to make it out with my friends? Finally, I gritted my teeth, grabbed my cane, and hobbled out the door.
I spent the day clumsily rushing through parking lots and feeling as if everyone else in the coffee shop was staring at me. When my friends and I later took a group photo, I put my cane behind my body where it couldn’t be seen.
Why do I feel so self-conscious about using something my body needs? Because of the stigma around mobility aids, people can look at you sideways when a young, seemingly “healthy” person is using a cane or wheelchair some of the time but not others. We can often experience microaggressions as we navigate the world. It’s difficult and often leaves me wondering if I’m truly “sick enough” to justify using a mobility aid.
The word “mobility” refers to your ability to move around. A mobility aid is a device that helps you walk or otherwise move from place to place if you have impaired mobility due to disability, injury, or a chronic condition. According to the Americans with Disabilities Act (ADA), types of mobility aids or devices include:
My friend Raegan, who shares her experience living with chronic illness on Instagram and TikTok, lives with hypermobile Ehlers-Danlos syndromes, postural orthostatic tachycardia syndrome, and mast cell activation syndrome. Some of the biggest symptoms that affect her life on a regular basis are:
While a doctor has never suggested she use a mobility aid, Raegan says that she uses a cane and wheelchair, and both are very helpful.
“I use a cane more regularly and a wheelchair for larger places like airports, fairs, festivals, et cetera,” she says. “They both help prevent increased pain and fatigue.”
Despite the obvious benefit, however, Raegan has questioned whether she “should” be using a mobility aid at all.
“I technically can walk [and] there are people who have it ‘worse off’ than I do,” she says.
She has also worried about whether people will think she’s being dramatic, faking, or seeking attention. These are worries that have often crossed my mind, too.
There’s a common stereotype held by the general public that everyone who uses a wheelchair is paralyzed in some way. But many people who live with invisible illnesses, such as Raeagan and myself, are “ambulatory wheelchair users.” This term refers to someone who is disabled and uses a wheelchair but is capable of walking.
For people like Raegan and me, we can physically walk. But the symptoms caused by being on our feet — such as passing out (which can be dangerous) or being in higher levels of pain the next day (which is just as valid) — mean that using a wheelchair is often helpful.
“People will act shocked or surprised when they see me walking ‘normal,’” Raegan says, adding that “I always feel a need to justify or explain, but whether or not I actually do is based on my energy levels and level of insecurities in that given moment.”
The ADA states that while business owners can ask you for “credible assurance” of a disability (such as a disability parking placard or a statement from you), they cannot ask about the “nature or extent” of your disability.
However, this protection doesn’t extend to any random stranger on the street. So, anytime I use a mobility aid in public, I’m always hyperconscious of the reactions I’m getting, whether those reactions are truly negative or whether I simply perceive them to be.
With many chronic conditions, people also find that their symptoms can fluctuate, varying in severity by the day, week, month, or even the time of day. The further past 8:00 p.m. it gets, the less effectively I’m able to walk, for example.
This is a term that Brianne Benness, host of the podcast “No End in Sight,” has coined as “dynamic disability.”
“My needs and abilities are different from day to day,” she writes on Medium. “I do need accommodations some of the time. I am chronically ill, and I am disabled… But on low symptom days, I’m able to navigate the world like an able-bodied person. My experience of disability is valid and more common than you might realize.”
Dynamic disability is another reason why someone might use a mobility aid on some days and not use one on others. But for those of us who live with a dynamic disability, it can be even more stressful to sporadically use a mobility aid as we worry about people’s reactions.
A mobility aid might be helpful to you if you struggle with symptoms such as:
By using a mobility aid, you may find that you’re able to tolerate more frequent or longer outings with fewer symptoms, less recovery time, and more independence and safety.
If you’d like, you can ask your doctor’s opinion on whether they think a mobility aid is a good idea. But you don’t need a prescription or their permission. Anyone can purchase a cane, walker, or wheelchair at a pharmacy or other local store. I got my cane on Amazon.
It can be intimidating to start using a mobility aid for the first time, especially if your illness or disability is invisible or dynamic. But you’re free to do whatever your body needs on any given day. And hopefully, you’ll soon find that the benefits far outweigh any negatives.
“If you’re asking yourself if you’re ‘sick enough’ for a mobility aid, the answer is most likely yes,” Raegan points out. “If it helps with your symptoms, then it’s definitely worth it regardless of ‘how sick’ you view yourself. Don’t let comparison or society’s ignorance in regards to mobility aids stop you from living a better quality of life!”
Medically reviewed on March 22, 2023
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