Can we take a second to appreciate health insurance? But just a second, though, because I think we can all agree that the health insurance system isn’t perfect. In fact, it needs some serious improvement.

Even though I’m big on positive change, I don’t think health care is something that will be easy to improve. It’s definitely an unfair fight just because of the way the system is set up. I have come across many people with severe disabilities who have been denied medical equipment by their insurance. This is a serious issue. 

If I can just express how important wheelchairs are to Pompe disease patients. And not just our wheelchairs but everything we need for daily activities. It’s more than just transportation and sitting comfortably for us. It’s our independence, our life. I personally freak out every time something is wrong with my wheelchair.


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If a new part is needed for repair, for example, I worry whether my insurance will approve it. On one occasion, my battery went bad on my electric wheelchair and it took 4 months to get it replaced. That means I was stuck in bed for months because I couldn’t use my wheelchair. That also means I missed doctor appointments and couldn’t even go out for fresh air. 

As bad as this sounds, it’s nothing compared to what others have gone through with being denied something they really need or having to wait for something that really was too important to wait for. At the end of the day, it comes down to asking friends and family for financial help.

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What worries me the most is how no one cares enough to help. Many of us turn to our doctors for advice to get what we need, whether it’s supplies or something simple like a ramp or lift. Not only is this stressful for the disabled person, but even more stressful for the caregiver, referring to the ones like myself who are mentally able to handle all their business/personal affairs but require a caregiver for physical help.

Family or not caring for someone with a disability is not easy and the last thing our caregivers need is the lack of equipment and accessibility. So what can we do about this? I believe the start comes with actually trying to help us. And when I say help us, I mean leading us to other resources or even offering us actionable advice. We are constantly left hanging by those who should be helping us.

I had a caseworker who was absolutely no help to me at all even though it was her job to help me. It’s stressful but also hurtful. It’s hard when we live in a world where literally everything is about politics and money. And all we want to do is to be able to get through each day as easily as we can. 

So here are my suggestions: let’s get our team of doctors more involved in our living situation. This means being more open and honest about our back pain or any other physical pain we’re dealing with. Maybe stronger medication isn’t needed. Maybe a medical bed, a better cane, or special shoes are what’s needed. 

This is when our doctors can become more involved and even though doctors can’t really do much about our living situation, they can point us in the right direction to get us what we need. Many of us don’t like asking for help and too many of us will give up after one “no.”

My point is don’t give up on something you really need and remember there is usually a way around obstacles to get what you need. When it seems like you’re facing an unfair battle, you’re not alone. Many people are or have been in the same position. 

But you have to understand the next health care provider won’t fully understand the importance of your needs and not everyone is kind enough to care, let alone help. We shouldn’t be denied the medical equipment that we need, but it happens. The system isn’t perfect, but we can work around it with help.