You may not have a choice about needing a mobility aid, but how you feel about it is completely up to you.
If someone had told me at 25 that I would be walking with a cane by age 30, I wouldn’t have believed them.
In my case, the cause wasn’t injury or accident, but psoriatic arthritis (PsA) — a chronic, autoimmune disease that causes inflammation, joint pain, fatigue, and mobility limitations in 30 percent of people with psoriasis.
During the first arthritis flare-up that landed me in the hospital, I literally could not stand on my own feet.
Over the next several years, as doctors prescribed one medication regimen after another, I faced a daunting new reality: I could no longer walk without assistance.
How could I find the right mobility device to suit my needs… and how could I get used to moving through the world with it?
Here are a few things I learned in my search to restore my mobility and maximize my quality of life with PsA.
Several weeks after the onset of PsA, I found I was still unable to walk, so I bought the cheapest manual wheelchair I could find. I chose a wheelchair partly because it was a familiar cultural icon, and I didn’t know much about my other options.
Once I delved more deeply into the world of mobility devices, I realized just how many options there are.
Broadly speaking, people with mobility issues have a choice between walking aids and seated mobility devices.
Walking aids include:
- cane-crutch hybrids
- rollators (walkers on wheels)
Seated mobility devices include:
- manual wheelchairs
- power wheelchairs
Since physical activity has been shown to improve both PsA symptoms and overall health, most users will want to choose the device that allows them to be as active as possible while also staving off pain and fatigue.
My manual wheelchair served me well in the short term, before I was able to find the right combination of medications to manage my symptoms. However, I soon realized that I wanted to be more active — even if it meant dealing with more physical pain.
Over the course of the next several years, as biologic drugs began to suppress some of my disease activity, I transitioned to using a rollator, then forearm crutches, and then finally, a cane.
All this experimentation was expensive. I wish I had known that many device companies allow prospective users to rent or try out different mobility aids and determine which one best suits their needs.
I also wish I had consulted with a doctor, occupational therapist, or physical therapist to learn how to use these devices correctly, since
When choosing your own mobility device(s), be open to multiple possibilities — and don’t be shy about asking for information on device usage from those in the know.
Even when I first got diagnosed with PsA, the last thing I wanted was to feel like a “sick person.”
I soon realized that I could keep my life as active and vibrant as possible by taking an open-minded, strategic approach to mobility aids.
It’s true that certain activities — like skiing, hiking, and climbing — are no longer feasible for me, but I’m lucky to be mobile enough that there are many things I can still do, if I have the right mobility aid on hand.
For instance, my arm crutches are ideal for nature walks, since they stabilize and support both sides of my body while leaving me flexible to maneuver.
When going to a museum or other accessible indoor attraction, I opt for a wheelchair, which lets me move through the space smoothly and view exhibits without pain or fatigue.
Now that my symptoms are mostly well-controlled, thanks to medication, I can often get by with a folding cane. It provides minimal support when I get tired, and it also serves as a signaling device to alert people that I may move slowly or need to sit down from time to time.
When choosing the mobility aid that’s right for you, think about what you want or need to get done on a particular day. Ask yourself what accessibility challenges you might encounter, and which device would help you face them with comfort and confidence.
Prior to my PsA diagnosis, I assumed that disability was a stable, fixed category — or, at least, a linear progression from wellness to illness.
One of the most surprising aspects of living with a chronic disease is how much my symptoms can fluctuate from one day or week to the next. Even in a single day, I often have periods in the morning and at night when my joints feel stiff and my range of motion is limited.
Once you know to expect these fluctuations, you become better able to plan your day — even if that means expecting a bit of unpredictability.
These emotional and logistical aspects of living with PsA require both flexibility and resilience.
It can be discouraging to lapse into an arthritis flare-up and find oneself back in a wheelchair after weeks of walking around with a less intensive mobility aid.
It can also be frustrating to find that certain devices may not work well for you at times when particular joints are giving you trouble. For instance, forearm crutches can be terrific for taking pressure off of weak knees or ankles, but they put a significant strain on a user’s shoulders and wrists.
As you pick a mobility aid, check in with yourself to figure out which body parts need extra support, and be prepared for the prospect that your mobility needs might shift depending on factors like the time of day or the weather.
The changeable nature of PsA symptoms can be hard for nondisabled onlookers to understand.
I have had friends ask me excitedly if I was cured when they saw me using a cane on a good day, instead of my usual rollator.
Conversely, I’ve encountered nosiness and skepticism from colleagues who had only met me at a meeting, seated, and later ran into me on the street and demanded, “What’s with the cane?”
Try not to get thrown off by these moments, and try not to feel like you’re “pretending” or being dramatic by making use of a mobility aid. Only you are inside your body — only you know what you need.
For me, the adjustment to this new world of mobility aids was emotionally fraught, since it meant reconciling myself to the fact of my disability. After all, those of us with PsA don’t use our mobility aids in the way someone with a broken leg might use crutches.
We know that our symptoms are treatable with medication, but that PsA can’t be cured. As a result, we may feel the need to integrate mobility devices into our sense of identity.
This can be difficult, especially if one doesn’t use the same device every day. No matter what, it takes time to get used to how it feels to use a mobility aid.
Accepting that these tools are extensions of your body — tools that accompany you through the world and help you live the life you want — takes even longer.
Be patient with others, and with yourself, as you figure out which equipment works best for you.
You may not have a choice about how large a role mobility aids play in your daily routine, but how you feel about them is completely up to you.
Michael M. Weinstein has written about disability, illness, and gender for venues including The New Yorker, The Los Angeles Review of Books, and Michigan Quarterly Review. He holds a PhD in English from Harvard and an MFA from the University of Michigan, where he’s currently a Zell Creative Writing Fellow. He’s currently at work on a book about the social and romantic lives of transgender Americans. You can find him on Twitter and Instagram.