Learning to Live With My New Wheelchairby Charis Hill Patient Expert
I used to dismiss the idea of using a wheelchair with, “I don’t need a wheelchair, I can walk!” Eventually, however, pain and fatigue isolated me so much that I saw the benefit of preserving my energy for more exciting activities than standing in line at the grocery store.
So, with the help of several people who donated to a crowdfund campaign, I found and bought a used, lightweight, Charis-sized, manual wheelchair.
I do not use my chair for every activity. Ankylosing spondylitis causes debilitating pain in my low back when I stand too long and increases fatigue the farther I walk, so I use my chair when I expect I will not have access to a seat when I need one. This allows me to once again participate in activities I previously avoided!
As I am adapting to this new-to-me mobility device, here are some things I am learning:
People assume I know what I am doing. I think most of us expect that if someone is walking they know how to walk, and if someone is using a wheelchair they know how to use it, so if I make a mistake with my chair, I feel I have disrupted the whole social order. I can recall numerous occasions when I have feigned confidence and hoped I would not need help. Thankfully, the more I use my chair, the more comfortable I am navigating new situations.
I still live life on both sides of the wheelchair. When I use my wheelchair, I prepare for outings practically, like remembering my gloves and wearing clothes that will not get trapped in my spokes. When I am on foot, I prepare mentally for the possibility that someone may challenge me for not looking sick.
People who know me are adjusting. My friends can be overly helpful and protective when I use my chair. I have learned to say, “I’m still learning, so please only help if I ask for it.” I have not yet taken my chair to church; I feel I would be overwhelmed by people’s sudden concern that “something happened to me.” Other friends ask about my chair as an exciting new part of my life. These conversations are extremely validating. Unfortunately, I have received one negative message from someone who said I looked better when I wasn’t using my chair. This person also told me to “Try to defeat AS with your willpower.” That this person felt comfortable saying these things bothered me, but I look back at the message as a reminder of why I am an ankylosing spondylitis advocate.
I am suddenly visibly disabled. Since my diagnosis in 2013, I have wished ankylosing spondylitis was a more visible disease. I spend a lot of time explaining and defending that I am in extreme pain and often receive suggestions for how to cure myself. Now that I use a wheelchair, people question me less and do not offer cures. I am still adjusting to what I refer to as an “absence of naysayers” — people who challenge my pain when I’m ambulatory.
I still have to pace myself, and pain still exists. Having the chair preserves energy but does not give me endless stamina. If I am in my wheelchair for too long, I experience hand and wrist pain from pushing. I can trigger an AS flare in my back if I overexert myself pushing uphill. Sitting long periods of time hurts, even though it feels better than standing. I have more neck pain if I have to look up at people too long, and I have to be careful with my neck when I pivot my head to look behind me.
My mental health has benefited. My chair lets me participate in life again! I attend social functions with friends and have less pain and fatigue. If I did not have my chair, I would be at home alone. I feel less anxiety when I use my wheelchair because I do not have to prove that I need accommodations. It is a big relief to not have to advocate for my physical needs in public.
My wheelchair is an extension of my creative identity. I designed and sewed my seat cushion cover, hanging front pockets, and seatback bag. I bought glow-in-the-dark hand rim grip covers. My spoke guard is clear plastic with bright colors. Like my clothes and hairstyle reflect my identity, so does my wheelchair.
My wheelchair gives me agency. I struggle with anxiety, but navigating with my wheelchair distracts me from my usual fear in social settings. Additionally, people are less likely to say, “But you don’t look sick,” when I am using a wheelchair, so my confidence is at its highest when I am rolling.
I have learned to not judge myself for needing to use a wheelchair and instead focus on how it has improved my life. This shift in worldview has helped me immensely. Where I could choose to see it as a burden or a pity that at 30 years of age I am wheelchair-bound, I have instead chosen to see this new tool as permission to live my best life with ankylosing spondylitis.