Disabled While in the Hospital

This might surprise you, but I typically try to avoid the hospital – both the ER and being admitted – as much as humanly possible. If it’s something that can be handled at home, or as an outpatient, even if it’s a little bit more work, I’ll take that option. That’s because while hospitals might seem like they’re something that should be accessible by default, that’s actually far from the case. Hospitals are extremely hard to navigate as a disabled person! Since my recent hospital stay is still fresh on my mind, I thought I’d explain a little bit more.

You’re the Expert, Not the Doctors

This one is especially true in the ER, where you’re being seen by providers who are trying to triage your problem, not by specialists who are familiar with you and your care. But while you may be in the hospital for an acute health issue and looking for answers, you have to constantly keep in mind that you’re actually the expert about your condition. Most doctors that I encounter in the ER have never heard of Spinal Muscular Atrophy (SMA); even when I tell them it’s a form of muscular dystrophy it only helps clear things up a little bit. So every time a new provider comes in, I have to explain things all over again.

And sometimes… the providers flat out don’t believe you! Which is extra challenging, because you’re trying to get answers about what’s going on, and trying to make the right decisions and choices for your health, but also trying to convince physicians about what you know is true. For example – in this recent stay, I tried to explain to a doctor that it’s not possible for me to fast – that people with SMA metabolize things differently, and that I can go into something called “metabolic acidosis” easily, where your body starts to break down your own muscles because there aren’t enough fat stores. But the doctor listened to my explanation, and then flat out told me no, it’s almost impossible for anyone who isn’t diabetic to get acidosis! He knew nothing about SMA, but just assumed he was right. I eventually did kind of convince him, but it was frustrating.

You Have to Constantly Advocate

Which brings me to the second challenge of being disabled at the hospital – you have to be ready to constantly advocate for yourself and your needs. This is actually something I recommend to all people, disabled or not, when you’re in the hospital. Just like you have to be the expert on your disability while in the hospital, you also have to be ready and willing to remind people about what that might mean for your needs. Loudly and repeatedly, if necessary.

It’s tough to do this on the best of days, but extra tough to do this when you’re in pain, or feeling poorly, or whatever the medical issue you’re going through is. You have to be clear, and direct, and be willing to push back against providers who can be pretty set in their opinions. It’s exhausting! But there’s no other option.

Hospitals (and Equipment) Aren’t Really Accessible

You might assume that healthcare facilities are accessible by default, since they’re health-related – but they’re really not. The CT scans, the rooms, the beds – I use all the same things that non-disabled people do, to varying degrees of success. My comfort largely depends on the staff on duty on any given day, and how willing they are to be creative and flexible. I was lucky this time and got some really great nurses, but that’s not always the case. Even with the very best care, making all these adaptations is a lot of work and adds on exhaustion during an already tiring time.

Things also just move very slowly and take a long time while in the hospital. For example – the room I was in didn’t have an accessible bathroom attached to it (too small to get in and transfer comfortably), so I had to request a bedside commode, which is basically a portable toilet. Luckily, I asked well in advance of when I needed it, because it took a few hours to get delivered to my room! I actually don’t know if I’ve ever had a room with an accessible bathroom, now that I think about it. And you can’t really be picky about your room choice – if you don’t take a room when one becomes available, you might have to wait hours for another to be free.

Being There Alone is Almost Impossible

This one I want to caveat that this is my OWN personal experience, and not representative of everyone with disabilities. But for me, staying alone at the hospital is pretty much impossible. At home, in my wheelchair and in my environment, I can be alone for a few hours before I need someone else’s help. But at the hospital? All bets are off.

The tough part about being in the hospital – at least at the beginning, when you’re still weak! – is that you’re stuck in your bed a lot. I might have some independence in my chair, but in a bed, I’m pretty much stuck. Anytime I want to shift the position of my legs or my feet, I need help. Nurses are willing to do this – but they’re also doing other patient care tasks, and not just hanging out by my bed to help me when I needed it. At the beginning of my recent hospital stay, I was on constant IV fluids, which meant I had to pee a LOT. Having to call the nurses every hour or so just for the bathroom – on top of any other things I needed help with – would’ve been a lot of time!

I also use a breathing machine overnight to help keep my lungs open, and in the hospital, that’s something that only a respiratory therapist can put on and help with. So I would’ve had to base my “bedtime” on their schedule… which is tough in a hospital, when time is skewed and you’re getting woken up at 4 or 5 AM for blood draws.

So I was very, very lucky that my mom was able to stay with me during my hospital stay to help me with all of these things. Without her, I probably wouldn’t have gotten discharged nearly as quickly as I did, or maybe I would’ve gotten a pressure sore from not moving enough while being in bed. Because the little things start to add up over a stay when you’re trying to get through in an inaccessible environment.

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