I thought I’d write for a moment about what it means to use a cane as a person with an invisible disability (fibromyalgia).
Invisible disabilities are life-altering health conditions which are nonetheless not always visible to a normal observer. Even a trained medical professional might miss them under casual observation. Fibromyalgia is a debilitating, and poorly understood condition. It combines chronic pain with other symptoms like sleep disturbance and severe fatigue.
I don’t use a cane every day, which can contribute to confusion from people who don’t understand how disabilities can work. I might seem “able bodied” one day, but the next (or even later the same day) be hobbling around in pain.
A lot of people have an ableist, or at least ignorant reaction to people whose disability manifests in “unexpected” (to them!) ways. Examples include wheelchair users who can walk, or a blind person using a smartphone. I thought explaining a bit more about how I use a cane with my disability might make a difference in people’s understanding.
How I use a cane with fibromyalgia
For me, my legs are often sore or unexpectedly weak so it helps to have a cane or walking stick handy. On my really bad days, during severe fibromyalgia flareups, I use a cane around the house. However, most days where I use a cane, I only use it when I’m outside of the house exploring, running errands or having fun.
If I’m having a good day, I often leave the cane at home. Some days, I feel good enough to go jogging to my gym. On a few days, I hurt too much to get out of bed without it. Overall, I’m relatively “lucky” to have so many better days, as I’m more able-bodied than many people with fibromyalgia. Even so, it’s had a dramatic effect on my life and the choices available to me.
There are exceptions, but I don’t often bring my cane with me during activist events. That’s because I usually need my hands free to tweet and share in my role as a gonzo journalist. That also means I sometimes stay home from protests if I don’t feel like I’ll be safe or physically comfortable. On those days, I support from home by being an information conduit and social media amplifier for my comrades.
Using a cane helps me balance the load between my muscle groups. I’m sharing some of the work my legs would be doing with my arms. Since I’m not compensating for a specific injury, I often switch which hand I hold my cane in. Since I’m left-handed, I probably use my cane on that side a bit more.
How I got started using a cane
I resisted using a cane for years for many reasons, even though I suspected it would help me feel better and be more mobile.
Some of it was internalized ableism. I didn’t want to “appear sick” to the world, even though I am a disabled person. I also imagined, incorrectly, as able-bodied people do, that I shouldn’t use a cane unless I feel equally terrible all the time. This is ridiculous of course; a near-sighted person doesn’t consider themselves less deserving to use glasses because they don’t need them to read books.
Another barrier for me, however, was the clinical nature of most canes I saw. If you go to the drug store, the canes you see look like they belong in a hospital, not in the hands of a person moving through the world. Fortunately, I began looking a little further afield and found more stylish canes. Some of my favorite canes come from a vendor that only works at Renaissance Faires. Another favorite was ordered for me years ago by a lover.
Looking overly clinical is a problem with a lot of assistive devices, one that’s slowly changing today. Thanks to advances in technology and diversity in fashion, there are slowly becoming more options for stylish assistive devices. Of course, the high cost of healthcare in general and many assistive devices specifically keeps these advancements out of reach of a lot of everyday, broke-ass disabled people.
Call me vain — I mean, I am — but a person’s personal style is part of their identity. We shouldn’t have to give that up to use an assistive device. It’s pretty easy to find nice looking glasses these days, and to find a fun looking cane with a bit of work. I hope more choices become easily available to all disabled people someday.
Misconceptions about canes and invisible disabilities
In addition to the physical benefits, a cane is also a useful signal that I am someone with a disability. For example, if I use a disabled seat on the bus, people are less likely to argue with me if I’m holding my cane. No one likes being questioned when they are already feeling bad. This visual cue helps maintain my sense of worth and humanity as I navigate the city.
This is a valid, social use of a cane. My disability is “real” all of the time but sometimes the physical manifestation of it helps people take me seriously.
I’ve already covered some of the misconceptions people have about using a cane with an invisible disability, such as confusion over the fact that I may not need a cane every day. Another one comes from misconceptions over what a cane user “looks like.”
While I’m getting a bit gray now, I’ve been using a cane for years. Some people think a cane user isn’t someone who is young. Or I look like I’m “too healthy” to use one. Whatever that means.
Something that’s surprised me, but that I’ve encountered more than once, comes from an ableist assumption about how canes should look. Some people actually assume I’m faking my disability because I use a stylish cane instead of one that looks like it belongs in a hospital.
In an ableist society, disabled people don’t deserve to look good, I guess. We have to look, as well as feel, miserable.
What to do when you see someone using a cane
Mind your own business. Like, unless we ask you for help.
I don’t mind talking to friends or people I’ve developed some rapport with about my illness and disability. However, I hate being judged for my disability, or its validity. That’s some ableist bullshit.
I also don’t really want to explain to my Lyft driver, or a similar stranger who I’ll never see again, “what’s wrong with me.”
On the other hand, I’ve never minded hearing a sincere complement: “nice cane!”
Using A Cane With An Invisible Disability by Kit O’Connell is licensed under a Creative Commons Attribution 4.0 International License.
Based on a work at https://kitoconnell.com/2019/02/15/cane-invisible-disability/.
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