When My Wheelchair Stopped Feeling Like Home

For many people with spinal muscular atrophy (SMA), a wheelchair is more than a piece of equipment. It’s an extension of the person sitting in it. It provides independence, makes freedom possible, and serves as the place from which daily life is experienced.

I’ve been in a power wheelchair since I was a toddler. I often joke with my siblings that I’ve been driving much longer than they have. For as long as I can remember, my wheelchair has been a safe place. It has allowed me to leave my house, spend time with family, run errands, and participate in the world around me.

While SMA has always brought challenges, my wheelchair has never been one of them - except, of course, when it’s time to get a new one. Anyone who uses a wheelchair knows that struggle.

A sudden and unwelcome change

But several months ago, something changed. I began experiencing increasing pain whenever I sat in my wheelchair. A deep pinching sensation developed in my right hip and buttock. Sometimes, numbness traveled down my leg. At times, relief could only be found by leaning forward or shifting into one very specific position.

Eventually, the pain followed me beyond my wheelchair. It began happening during transfers and while being moved in my Hoyer lift and sling. What started as discomfort became something much harder to ignore.

The pain and discomfort have now reached the point where I sometimes find myself shaking or crying when I’m placed in certain positions. What was once a source of freedom has gradually become a source of anxiety.

When sitting becomes painful

Pain is something many people with SMA become familiar with over time. Muscles weaken, joints compensate, and years of remaining in the same positions can take a toll on the body. Many of us also live with hip subluxations or dislocations. In my case, my hips have been dislocated for most of my life. Because of that, hip pain isn’t entirely unfamiliar to me. What makes this experience different is that it doesn’t feel like the pain I’ve lived with for years. This pain is new.

The deep pinching sensation, the numbness traveling down my leg, and the intense discomfort during transfers all appeared suddenly after decades of knowing what my “normal” felt like. That’s part of what makes this experience so unsettling. When you’ve lived with SMA long enough, you become familiar with your body’s usual aches, pains, and limitations. When something completely different appears, it gets your attention.

Ironically, I had finally gotten much of my chronic pain under better control with the help of my doctor when this new pain emerged. Even with years of experience managing pain, I wasn’t prepared for what would happen when sitting itself became painful.

Navigating the pain from my wheelchair

For many people, standing up and walking away from discomfort is an option. For wheelchair users, the situation is far more complicated. My wheelchair isn’t simply a chair. It’s how I move through the world. I can’t simply stop using it.

Trying to function while experiencing this pain feels like asking someone with a broken leg to keep walking because walking is required to get through the day. As sitting became more difficult, my independence began shrinking.

I started spending more time in bed. Outings became harder to consider. Activities that were once routine started to feel impossible. Instead of looking forward to getting into my chair, I found myself anticipating pain. A wheelchair is supposed to increase participation in life. When pain becomes attached to it, the opposite can happen.

The emotional impact of losing mobility

The physical pain has been difficult, but the emotional impact has been just as significant. There is a unique kind of grief that comes from losing trust in something that has always supported your independence.

People often assume wheelchair users have already adapted to limitation and loss. What they don’t always realize is that new losses continue to happen.

And with those losses come new fears. Is my SMA progressing? Will I eventually become bed-bound? Will doctors find an answer? Will there be anything they can do to help?

Loss doesn’t always involve walking. Sometimes loss looks like being unable to sit comfortably in the wheelchair you’ve relied on for years. Sometimes it looks like declining invitations because the pain feels overwhelming. Sometimes it looks like spending more time isolated at home because leaving bed feels too difficult. These changes may seem small from the outside, but they can affect nearly every aspect of daily life.

An invisible struggle

One of the most frustrating parts of this experience has been how invisible it is. When people see me, they see the same wheelchair I have always used. From the outside, nothing appears different.

They don’t see the pain I may feel every time I transfer into the chair.

They don’t see the mental calculation that happens before deciding whether an outing is worth the discomfort.

They don’t see the fear of spending another day searching for a position that doesn’t hurt. Invisible struggles are often the hardest to explain because there are no obvious signs. Yet they deserve acknowledgment.

The importance of listening to our bodies

As people with SMA age, our bodies change. New pain can develop. Old positioning issues can become more significant. Problems that were manageable for years may suddenly demand attention. It can be tempting to push through discomfort, especially when independence feels threatened.

However, we shouldn’t simply accept pain because disability already exists. When something changes, we need to pay attention. We need to ask questions. We need to voice concerns. We may need to advocate for ourselves. Too often, pain in disabled individuals is dismissed as an expected part of the condition. While some discomfort may be common, new symptoms still deserve evaluation and serious attention.

Finding safety again

I don’t yet have all the answers regarding my hip pain and positioning issues. I’m still waiting on X-rays, searching for solutions, and considering adjustments.

What I do know is that this experience has changed my perspective.

I have always viewed my wheelchair as a symbol of freedom. Now I understand that maintaining that freedom requires ongoing attention to comfort, positioning, and physical health. A wheelchair should feel like a safe place. It should support independence, not limit it. When that sense of safety is lost, the impact extends far beyond physical pain.

For now, I’m learning to be patient with myself. I rest when needed and continue pursuing answers. Most importantly, I remind myself that asking for help is not a sign of weakness. Sometimes the strongest thing we can do is acknowledge that something is wrong and refuse to accept unnecessary pain as the new normal.

Because while SMA has taught me to adapt to many things, accepting a life defined by avoidable pain isn’t one of them.