Before I finish this “Hospital Blogging!” thing, I think it’s important to acknowledge that many people with disabilities have a much more difficult time in the hospital than I did. Partly this is because independent, empowered disabled people experience their disabilities in fundamentally non-medical ways, while the medical profession, naturally, sees disabilities as medical problems within their purview. It’s a culture clash.
However, in my indirect experience assisting other disabled people, the disabled people who have the most difficulty in hospitals are those with what I like to call “Rodney Dangerfield Disabilities” … disabilities that "don’t get no respect." Emotional / mental impairments fall within this category. So do certain chronic pain / chronic illness conditions like Fibromyalgia, POTS, Chronic Fatigue Syndrome. In fact, any conditions that are hard for doctors to precisely identify, localize, and treat tend to be treated with skepticism, which means the people who have these conditions are treated as suspect.
For a variety of reasons, the medical profession seems to be on guard against being duped or swindled by a supposed horde of lazy malingerers, “head cases”, and just plain drug seekers. I suppose all three exist, and hospital personnel probably do meet them more than most of us. But huge numbers of disabled people are tarred with this suspicion, which poisons what should be a collaborative and trusting patient / provider relationship. When you are in the hospital, by necessity, and that’s how they feel about you, your can’t even get away. You’re stuck needing treatment from people who won’t give it to you, but in a weird way won’t let you go either.
I am lucky that I have never experienced this for myself. It’s a huge problem that still needs a lot of work.
If you want to read my hospital blog posts again, from start to finish, here are the links:
I am home again after just shy of a week in the hospital being treated for pneumonia. Aside from having to go in the first place, things could not have gone better for me. Of course, being in my own place again is bliss.
I have been an inpatient at my local hospital I think 5 times now since I moved back to my hometown in 1991. Roughly speaking, each stay has been an improvement on the last in terms of how they dealt with my disabilities. Like all hospitals, there are bureaucratic absurdities and staff that just don’t get it. But for me at least, things have gotten steadily better. Maybe the best thing about this is that when I am very sick, I don’t hesitate to seek full-on treatment out of fear of just being in the hospital. Unfortunately, I have known many disabled people who can’t say this.
If I had to choose one factor that can either make or break how hospital staff deal with patients who have long-term disabilities, I would pick flexibility.
More recently trained providers seem to have an easier time reconciling their need to follow procedures with our need to do things differently due to our disability and self-care routines. The very best mesh the two so smoothly that you don’t notice any conflict at all. These are also the ones who have a knack for introducing new ideas for our better health going forward, without making us feel threatened or criticized.
My experience this week was that by far most of the staff at this hospital are flexible in this critical way. A few of them seemed uncomfortable with the words, phrases, and tones that had been carefully drilled into them. A collaborative approach seemed uncomfortable to them. That’s okay, it doesn’t have to be perfect. In any case, I’d say 75% of the nurses, doctors, and technicians who treated me had no trouble being in charge in the best way medically, while never treating me like a subordinate or worse, a failure for being there.
Flexibility, the willingness to see and do things differently, allows hospitals to offer the best of both worlds to disabled patients. They provide safe, expert, authoritative treatment and advice for acute illness that is beyond us, in an environment that does not rob us of our hard-won independence and agency.
Just to double down on something I mentioned a couple of days ago ...
One way to tell you’re recovering from hospital-level illness is when you start caring again about things you stopped caring about for awhile. For instance, putting on pants and a t-shirt instead of just underwear and a hospital gown. Being a very small guy, I had to wear a gown with Tiggers all over it, and I have to admit, I kind of dug it because Tigger is one of my favorite of the Winnie the Pooh-via-Disney characters. I’m tentatively due to go home Monday though, so it’s time to begin gradually re-upgrading my general living standards. It feels good.
I think I’ll save the shave until I actually get home.
I am out of insights today on the hospital scene. Everything is fine, but there’s not much else to report. My only observation is that I have started noticing the quickly re-learned dependency creeping in. Since I think I’m on the way to being better, it’s time to start doing more for myself. That’s not an original thought, and everyone who spends time in the hospital deals with this. But it’s at least a slightly bigger deal for those of us with disabilities.
It's Throwback Thursday. A year ago in Disability Thinking: Blech!
I let people do things for me … and ask them to do things for me … that I normally do myself. Initially, I even let people do things for me that I probably could do even though I’m sick.
I give an accurate rundown of my regular medication and treatment routines but for the first couple of days, I don’t obsessively follow up about it. If the doctors want to alter my usual meds to help fight whatever I’ve got, that’s fine with me. After a day or two, I start gradually taking the reins back, asking which changes are permanent, which temporary, etc.
I try to remember that some people just naturally speak in condescending, nursery-school tones, to everyone. Also, it seems like there are schools of thought in nurse training in particular that promote being super-sweet, while others seem to opt for more businesslike, or more jovial tones. None of these variations necessarily mean anything about how nurses view me and my disabilities.
I’ve got pneumonia, so I am in the hospital, I hope only for a few days. There’s good Wi-Fi here, and I’ve got my laptop, so I’m thinking of doing a little detour into that awkward corner of the disability experience, getting acute care for “normal people sickness”, within the medical system. So many of us, as disabled adults, try to keep the medical world at bay, because usually we have had some fairly traumatic experiences with it due to our disabilities. I’m talking about experiences here, not outcomes. I have had great good fortune since my birth in the medical treatment of my disabilities. Yet, it’s not a world I want to be part of, even in a benign way.
So far, everything is going fine here. It’s my hometown hospital, and by and large they know me and my peculiar needs. The night shift staff were great as they got used to my ventilator and helped me get to bed with all the IVs and wires and such. I slept well.
The truth is, when I am really sick, there is some real relief in relinquishing some of my independence and loner-ism and just giving myself over to what they have planned for me. I also take advantage of the little luxuries, if I can. As a Facebook friend commented last night, “Never underestimate the healing powers of popsicles and jello.” Note to self: request popsicles.
The flip side is that when I start getting pissy about things that go wrong, and I start noticing again the absurdities of the entirely bureaucratic hospital ecosystem, then I know I’m just about well enough to go home! I hope that will be soon. In the meantime, I might have more to blog about.