Ambulatory Wheelchair Users and the Insurance Maze: 6 Months In

I want to start by saying this is not a success story. Not yet.

I don't have my wheelchair yet. I'm still borrowing one from a friend. It doesn't fit my body, and I'm still waiting for my own to be delivered. When I started this process six months ago, I had no idea how layered and slow and confusing it would be. I'm writing this from the tail end of the first chapter, not from the other side, because I think that's actually more useful.

If you're somewhere in this maze too, I want you to know what it looks like in real time. Not the cleaned-up version. The actual version, where even the healthcare providers are sometimes figuring it out alongside you.

First: What Even Is an Ambulatory Wheelchair User?

Before I get into my story, I want to address something, because it's something I've had to explain more times than I can count.

Ambulatory wheelchair users can walk. And they also need a wheelchair.

Those two things are not contradictory, even though the world often treats them like they are. An ambulatory wheelchair user might be able to walk across a room but not through a grocery store. They might walk on good days and use a chair on bad ones. They might walk in short bursts but rely on a wheelchair to actually participate in life without destroying themselves in the process.

For people with conditions like hypermobile Ehlers-Danlos syndrome (hEDS), POTS, ME/CFS, MS, fibromyalgia, and many others, the question isn't always can you walk? It's what does walking cost you, and at what point does that cost become too high?

I can walk. I also use a wheelchair daily. Both of those things are true.

If you're sitting with the question of whether you "qualify" for mobility support, I want to gently offer that the bar isn't whether you can walk at all. The bar is whether a mobility aid would help you function, protect your body, or participate in your own life more safely. That's worth taking seriously.

How This Actually Started

I've been living with hypermobile Ehlers-Danlos syndrome (hEDS) and POTS for a long time. The joint instability, chronic fatigue, orthostatic intolerance, and pain were not new. What changed was the degree to which upright, unsupported movement was becoming something I had to carefully ration.

In January, I started borrowing a manual wheelchair from a friend. It doesn't fit me well, but it was something, and having it made undeniably clear how much I needed my own. So I started asking questions.

The first stop seemed obvious: my physical therapist.

And here's the first thing I learned about this process. Even healthcare providers don't always have a clear map for this.

My PT consulted with other PTs. There was conversation, some uncertainty, some back-and-forth. Nobody did anything wrong. It's just that the process for obtaining a wheelchair, especially a specialty wheelchair for someone with complex needs, is not a simple or well-worn path in most clinical settings. There was a period where things just... stalled.

I want to normalize that. Not because it's okay that the system is this opaque, but because if your process has stalled, or if the people around you seem uncertain, that doesn't mean you've done something wrong. It might just mean you're all figuring it out together.

The PCP Appointment That Actually Moved Things Forward

Eventually, the conversation shifted to my primary care provider. And this is where something important happened.

My husband brought me to the appointment using one of the office's wheelchairs. When my PCP and I talked about mobility support, she was direct with me: she needed to see my limitations in person in order to document medical necessity.

That moment, being seen in a wheelchair and having my reality witnessed, mattered. Documentation of medical necessity isn't just about the diagnosis on paper. It's often about being seen in the reality of what you're living.

That felt both validating and a little absurd. I had to be seen struggling to have my struggle documented. But that's how it works, and knowing that going in would have helped me.

Not All Wheelchairs Are the Same Process

This was one of the most important things I learned, and I wish someone had explained it to me at the beginning.

A basic manual wheelchair can sometimes be prescribed fairly directly through a DME (durable medical equipment) supplier with a physician's prescription.

A specialty wheelchair, which includes lightweight manual chairs, power-assist options, and fully powered chairs, requires an entirely different process. These typically involve:

• A formal mobility evaluation

• Specialized documentation of need

• Assessment through a rehab-based seating clinic

• Justification for why a basic chair is not sufficient

That last part matters enormously for people with hEDS, which I'll explain below.

Why hEDS Changes the Entire Conversation

Here's where I want to slow down, because this is something a lot of people don't understand, and it's why my process has been more involved than it might be for someone with a different mobility presentation.

When most people picture someone needing a wheelchair, they think about the legs. But for someone with hEDS, the problem isn't only getting from point A to point B. It's about what happens to the entire body in the process.

Manual wheelchair propulsion, pushing yourself forward repeatedly with your arms, puts significant repetitive stress on the shoulders, wrists, elbows, and hands. In a hypermobile body, those joints are already prone to instability, subluxations, and overuse injury. A poorly matched chair, or one that requires more upper body effort than the joints can safely tolerate, doesn't just fail to help. It can actively cause harm.

So the goal isn't just get a wheelchair. The goal is get the right wheelchair for this specific body and these specific needs.

That might mean a lightweight frame. It might mean power assist. It might mean a specific seating configuration to help manage POTS symptoms. "Just get a basic chair" is not necessarily a sufficient answer, and advocating for a proper evaluation isn't being difficult. It's being medically appropriate.

When the System Loses Your Paperwork. Twice.

Getting the referral to Mary Free Bed was one thing. Getting everything approved and moving was another.

Carelink, the rehab equipment coordination service involved in this process, lost my doctor's approval not once, but twice. Both times, the process stalled. Both times, I had to figure out why.

Eventually I went into MyChart myself, pulled the documentation directly, and emailed it to the Carelink rehab tech with a fairly clear message: here it is. Send this to insurance and get it approved.

I want to sit with that for a second, because I think it's important to name. I was the one who was sick. I was the one borrowing a wheelchair that didn't fit my body. I was the one managing fatigue and pain and all the other things that come with hEDS and POTS, and I was also the one tracking down paperwork, resubmitting it, and making sure it didn't fall through the cracks a third time. That's not how it should work. But it's often how it does work, and knowing that going in matters.

After I got the paperwork sorted, I called my insurance company directly and requested an expedited review, citing the delays that had already happened. They granted it.

Not everyone will get that. Expedited reviews are typically approved based on medical urgency, and the specifics of my situation qualified. But if you're stuck in a delay and you haven't asked your insurance company whether an expedite is possible, it's worth making that call. The worst they can say is no.

The Evaluation, and Where Things Stand Now

After months of referrals slowly working their way through the system, March 25th finally arrived: my full mobility evaluation at Mary Free Bed Rehabilitation Hospital's OT and seating clinic.

That appointment assessed what type of chair would actually work for my body. Not just my ability to move, but my joint stability, fatigue, POTS management, and long-term function. The result: a custom wheelchair with power assist has been ordered.

I'm still waiting on delivery. I'm still borrowing my friend's chair that doesn't fit. Six months in, and the chair isn't in my hands yet.

But it's coming. And now I know exactly how long and winding the road from "I think I need a wheelchair" to "a wheelchair designed for my body is on its way" actually is.

What I'd Tell Someone Just Starting This Process

The system is not intuitive. It's not fast. And the people inside it, including well-meaning clinicians, are sometimes navigating it right alongside you. That's not a reason to give up. It's just the reality, and knowing it early can save you a lot of confusion and self-doubt.

You deserve a chair that actually fits your body and your needs. Not whatever's easiest to get through the system. Not a chair borrowed from someone else. Yours.

I'll keep documenting as I go.

Part 2 will cover the mobility evaluation at Mary Free Bed in more detail: what it involved, what was assessed, and what I learned. Part 3 will cover delivery, fitting, and first impressions.

If you're navigating a similar process and want to share your experience, I'd love to hear from you.