chronic illness

Why I'm suspicious of optimistic doctors

The Uninspirational wrote a reply to my post on how disabled kids learn to be suspicious of optimistic teachers. They point out that the same dynamic happens with doctors:

This pattern, where somebody in a position of power expects their actions to somehow rescue a person they’re supposed to help in some way, is something I’ve experienced a lot as a patient within the healthcare system. Mostly with doctors but also with psychologists, physiotherapists and occupational therapists. It goes something like this…

I’d recommend clicking through and reading the whole thing. It’s a good post.

look past the wheelchair and see the disability

Wheelchairs don’t have disabilities; people do. Unfortunately, many people intuitively think of disability as residing in wheelchairs and other adaptive equipment, and forget that it’s a basic fact about a person and that person’s body.


This can cause a lot of problems and misunderstandings.


For example: Jane uses a wheelchair most of the time, but sometimes walks when she needs to go somewhere inaccessible. That’s nastily exhausting, bad for her health, and comes with a significant risk of injury. Sometimes she does it anyway because it’s important for her to go to an event, or take a class, or do something else in an inaccessible place.


Jane’s sister Sarah is getting married, and has chosen an inaccessible location. Jane decides that it’s important enough to her to go to that wedding that she’s willing to go even though she won’t be able to bring her wheelchair.


All of Jane’s relatives assume that this means that she is ~getting better~, and doesn’t need mobility equipment anymore, even though her disability is not an illness and is not something that can be changed. What it actually means is that she’s having a very difficult and possibly dangerous day because her sister made an inconsiderate choice.


Jane’s wheelchair doesn’t have a disability; Jane does. And when Jane isn’t using her wheelchair, it doesn’t mean that she’s somehow less disabled; it means that her needs aren’t being met.


Or, another example: Bill has a chronic illness. He usually needs his wheelchair to get through the day, but sometimes he’s feeling particularly energetic and decides to walk somewhere. His friend Joe sees him and says “It’s so nice to see that you’re getting better!”. This bothers Bill, because he’s not getting better, and he’s not going to get better, he’s just having a day where taking a walk is an option. Bill would like people in his life who don’t understand his reality to stop making inappropriately intimate comments about his health.


There are many other examples, for just about every disability category. People make a lot of unwarranted and intrusive assumptions about someone’s disability and health based on what adaptive equipment they are or aren't using on a particular day. Those assumptions can cause serious problems for people, and it’s important to stop making them.


Mobility equipment doesn’t have disabilities. People do.

hi realsocialskills! i have been a fan of your blog for a long time, and i was hoping you might be able to help me.

because of my physical health, my amazing occupational therapist is getting me a new bed, and it’s arriving this monday! a hospital bed at that. it’s going to be adjustable and all, helping me immensely. the worry is, it’s going to be too hospital-y and i won’t be comfortable/at ease in it, and therefore unable to sleep. (the amount of time i’ve spent in hospitals for my own and other people’s health is staggering, so i’m quite concerned about this possibly being an alienating experience instead of a helpful one.) i’m already planning on putting my garland of rose lights around the side of it, and also spraying some perfume on it so it doesn’t smell so weird, but i’m not sure of anything else i could do to make it feel less weird.

any suggestions would be so welcome! thank you very much for your time, have a nice day!

realsocialskills said:

I’m not sure what to suggest, but I bet a lot of y'all do.

I wonder if there’s a way you could modify your bed that wouldn’t be allowed in a hospital? Like, putting stickers on it, or painting your name on it with nail polish or something. That might make it feel more like your bed that you control rather than like being in a hospital.

Anyone want to weigh in?

techno4tomcats:

tser:

secretsofthedisabled:

dendriforming:

slightmayhem:

secretsofthedisabled:

realsocialskills:

secretsofthedisabled:

SRS: Yellow

tw: ableism, staring at disabled people

realsocialskills:

I look contagious but I’m not. How do I tell people this? How do I get them to stop staring and stop being afraid they’ll catch my uncatchable condition?
realsocialskills said:
I don’t know, unfortunately. Do any of y’all have strategies for dealing with this?

secretsofthedisabled said:

My answer even now is cover up. That’s all I can do. I wish there was a better solution, sorry. If anyone has one, I’d love it.

(I’m also chiming in that wearing a t-shirt with my condition on it is highly uncomfortable and just not feasible.)

realsocialskills said:

What do you mean by cover up? Do you mean like, wearing a lot of clothing? Or something else?

secretsofthedisabled said

For example, if the mark is on your neck, wear high collars/a scarf. On your leg, wear pants. On your arm, wear sleeves/an armband. It sucks to do this when you’re really hot, but I chose to instead of being stared at. (You may choose not to, and that’s fine, of course.)

Depending on what type of mark it is, and how sensitive you are, you may be able to use make-up.

slightmayhem said:

people can judge you as “looking contagious” from other chronic disabling conditions besides skin conditions.  CF, COPD or asthma for example can cause a chronic cough that might appear like pneumonia or another contagious cough.  Anxiety can manifest in chronic itching or skin picking which could be judged as head lice, etc.

Sometimes, it’s safer to lie about these conditions than to tell the truth and disclose (for example, if you are afraid of being outed at work, or if you are afraid of social backlash from a more chronic condition.) 

Or simply stating “it’s not contagious” will often work. 

dendriforming said:

Yep.

I wish “it’s not contagious” worked more reliably, though. I have CF, and I disclose to more people than I probably should, because a lot of people won’t stop pushing after I try that.

secretsofthedisabled said:

Both of you have excellent points. By the way, has “something’s caught in my throat, no biggie” worked for any chronic coughers?

tser said:

“Something’s caught in my throat,” wouldn’t work for my kind of cough. It’s huge, gagging, doubling me over for minutes on end, and has often ended with me throwing up in public. (Or wetting my pants. Yes I am admitting this in public on tumblr. Sorry for the TMI, but these are the realities people with disabilities face.)

In addition, so many times no one says anything, they just glare, or move away with a look of disgust, so I don’t feel like I can say anything.

This is something I’m dealing with a lot lately. Most people in the studio know it’s chronic and not contagious, but there’s one guy who looks at me, very pointedly, EVERY TIME I start coughing like, “So rude, why did you come to the studio SICK,” and “Ewwww.” And I always get THE LOOK on the bus. 

I get constant commentary like, “Summer cold?” “Do you have the flu?” along with people moving away, avoiding me like I have the plague, etc. I mean, I understand. Because of the chronic illness, I can’t afford to get Regular Sick myself, it could make me really really sick and end up in the hospital, so I am very careful to wash my hands, avoid people who are ill, and so on. I understand that no one ever wants to get sick, regardless of their general health status. I also understand people have specific phobias and OCD and similar disorders themselves that would make my cough terrifying to them.

But being ostracized all the time sucks. 

I had one clerk in Game Stop ask if I was turning into a zombie. I said no, it was a chronic condition, not contagious. He followed up with, “Okay. Well, are you going to bite me?” I said, “No, it doesn’t make me do that.” I know he was covering his fear with humor, but I felt humiliated. 

Not everyone assumes contagion, though sometimes it’s kind of amusing. I was resting this weekend on my walker at the side of the sidewalk, trying not to hack up a lung, and an eclectically dressed very loud woman, who had been swearing at various business people for not providing her with a staple gun, duct tape, or safety pins (seriously, she was ANGRY) as they walked by, suddenly stopped and said to me,

“VITAMIN C!”

I was like, “Wuh—*wheeze*-whha?”

“Vitamin C! Seriously, it’s an AUTOIMMUNE DISORDER. I should know. I had MS, I was in a wheelchair. VITAMIN C!”

I coughed and blinked and she yelled, “FEEL BETTER SISTER!” and darted across the road.

Well, I had consumed a cocktail of Airborne and Emergen-C that morning and guess what, I don’t have MS, so obviously it’s working. /sarcasm *lmao* 

techno4tomcats said:

People far too often mistake my slurred speech and poor motor control as drunkenness and it has gotten me into trouble a few times. (eg: someone calling the police because I was drunk and disorderly when in fact I have having an absence seizure) One time I was pinned out and shouted at which triggered a larger seizure from stress and panic. Was only when I started full out convulsing I was let go without being charged but I was yelled at and generally felt less than human.

I dont have any way of downplaying or fronting this, except having someone close by to assist me/reassure people I’m sick not stoned off my face.

I now have social anxiety at being alone in public spaces and i dont know how to overcome it. :/

secretsofthedisabled:

SRS: Yellow

tw: ableism, staring at disabled people

realsocialskills:

I look contagious but I’m not. How do I tell people this? How do I get them to stop staring and stop being afraid they’ll catch my uncatchable condition?
realsocialskills said:
I don’t know, unfortunately. Do any of y’all have strategies for dealing with this?

secretsofthedisabled said:

My answer even now is cover up. That’s all I can do. I wish there was a better solution, sorry. If anyone has one, I’d love it.

(I’m also chiming in that wearing a t-shirt with my condition on it is highly uncomfortable and just not feasible.)

realsocialskills said:

What do you mean by cover up? Do you mean like, wearing a lot of clothing? Or something else?

dendriforming:

realsocialskills:

I look contagious but I’m not. How do I tell people this? How do I get them to stop staring and stop being afraid they’ll catch my uncatchable condition?
realsocialskills said:
I don’t know, unfortunately. Do any of y’all have strategies for dealing with this?

dendriforming said:

I *wish* I did.

I do have a response to the only strategy offered thus far: “Embarrassing as it might be, the best I can come up with is getting an t-shirt/sweatshirt printed up that says something like “I see you looking at me. I can’t blame you for I am awesome. I deal with (medical name) every day, and I am strong.”

If the condition is a) possibly life-threatening, and b) relatively well-known, this isn’t a good solution. I’m in a similar position to anonymous. I do not want my legal name publicly associated with my condition (because I want to do bizarre things like get hired), which would almost certainly happen if I made a habit of wearing a shirt announcing it.

(Edited, because I am not, in fact, in a similar person to anonymous. I hope neither of us are inside a person at all!)