How most people with invisible illnesses are treated by health care “professionals”
The Golden Girls didn’t fuck around
pls watch
honestly i really appreciated this scene when I first saw it bc it took me like two years to get a diagnosis for what’s wrong with me
Dorothy: Dr. Budd?
Dr. Budd: Yes?
Dorothy: You probably don’t remember me, but you told me I wasn’t sick. Do you remember? You told me I was just getting old.
Dr. Budd: I’m sorry, I really don’t–
Dorothy: Remember. Maybe you’re getting old. That’s a little joke. Well, I tell you, Dr. Budd, I really am sick. I have chronic fatigue syndrome. That is a real illness. You can check with the Center for Disease Control.
Dr. Budd: Huh. Well, I’m sorry about that.
Dorothy: Well, I’m glad! At least I know I have something.
Dr. Budd: I’m sure. Well, nice seeing you.
Dorothy: Not so fast. There are some things I have to say. There are a lot of things that I have to say. Words can’t express what I have to say. [tearing up] What I went through, what you put me through—I can’t do this in a restaurant.
Dr. Budd: Good!
Dorothy: But I will!
Dr. Budd’s date: Louis, who is this person?
Dr. Budd: Look, Miss–
Dorothy: Sit. I sat for you long enough. Dr. Budd, I came to you sick—sick and scared—and you dismissed me. You didn’t have the answer, and instead of saying “I’m sorry, I don’t know what’s wrong with you,” you made me feel crazy, like I had made it all up. You dismissed me! You made me feel like a child, a fool, a neurotic who was wasting your precious time. Is that your caring profession? Is that healing? No one deserves that kind of treatment, Dr. Budd, no one. I suspect had I been a man, I might have been taken a bit more seriously, and not told to go to a hairdresser.
Dr. Budd: Look, I am not going to sit here anymore–
Dr. Budd’s date: Shut up, Louis.
Dorothy: I don’t know where you doctors lose your humanity, but you lose it. You know, if all of you, at the beginning of your careers, could get very sick and very scared for a while, you’d probably learn more from that than anything else. You’d better start listening to your patients. They need to be heard. They need caring. They need compassion. They need attending to. You know, someday, Dr. Budd, you’re gonna be on the other side of the table, and as angry as I am, and as angry as I always will be, I still wish you a better doctor than you were to me.
Reblogging for any of my mutuals who’ve ever dealt with Dr. Budd.
I used to love this show and I don’t remember Dorothy having Cfs. Everything she says rings true
People love to talk about whether or not disabled people can work
but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more)
Dead silence. Nobody cares.
File this under, oh you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.
This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours of activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.
Far too often abled people see the things they do easily as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.
reblog bc the non activities thing seems really important words
I get X number of pain-free steps per day right now, which means that, for large conventions (like SDCC), I need to be in a mobility device. I had someone ask if I used up my steps every day before transferring to the scooter, and look surprised and a little horrified when I said “no, I save them so I can go to the bathroom unassisted.” Like, they had never considered that walking is involved in peeing.
!
Reblogging for the important point that the term “activity” may mean something very different and much broader for a disabled person with a chronic pain or fatigue related condition compared to its meaning for a non disabled person. If you’re tired enough, simply sitting up in a chair rather than lying in bed is an activity that drains energy otherwise usable for other things. A thing I knew from other people with pain and fatigue related conditions, but worth reinforcing for followers who didnt know or had forgotten.
Just a quick note on current UK political events:
They know they’re killing us. They have the numbers, they know we’re dying because of their cuts to disability spending.
They can say whatever they want, but they can’t claim they didn’t know.
They are killing us. They’re looking at the numbers of us dying because of their cuts, and they are introducing further cuts and further gatekeeping to prevent new applications from going through.
Don’t let anyone make you forget. They know they’re spilling our blood, and their response is to drive the knife in deeper.
“The UK has become the first country in the world to be placed under investigation by the United Nations for violating the human rights of people with disabilities amid fears that thousands may have died as a consequence of controversial welfare reforms and austerity-driven cuts to benefits and care budgets. – x
Thanks for adding a source!
If anyone has any other information on this, I’d love to see it. It’s something I plan to point out during my evaluations for work assistance, just in case they think I’m exaggerating when I tell them trying to hold a job would kill me.
Give me about an hour to get onto desktop and I’ll get stuff. What sort of stuff do you want? People’s stories + the shitty things the Tories are doing?
Definitely people’s stories. Knowing more in depth who’s being turned away would likely help. These people are seriously going to reevaluate me after last year deciding I’d last been fit for work in 1996, and I just don’t trust them at all. (I was 10 in 1996, btw.)
Sadly a lot of it will be bad.
Another thing that happened was the much loathed “bedroom tax” which ended up hitting a lot of people with special requirements badly -I.e. one woman lost the reinforced panic room she got because her ex was violently stalking her and another lost their room of medical equipment because neither could afford the extra tax.OK, here goes.
This article last February suggests that at least 49 suicides had occurred due to cuts.
In September 2014, a diabetic starved to death due to benefits cuts.
August 2015, reports of 1000s dying after being declared fit to work.
Here is the actual DWP report on disabled people dying after their benefits were cut or revoked.
The #IDSMurder hashtag on Twitter, filled with people telling their stories.
A 22-year old man with schizophrenia was found dead after being decleared fit to work.
A 67-year-old woman was declared to healthy for Sickness Benefits the day she died.
The DWP refused to reinstate the benefits of a disabled woman who is now reliant on food banks.
Partially blind woman commited suicide following benefits being cut.
Another woman also committed suicide within days of beiing declared “fit to work”.
Areas with the highest number of fit to work assessments also have the highest suicide rates.
And that’s just scratching the surface. 20 minutes research got me all that stuff.
You know there’s probably a party staffer who’s said the words “Thankfully posts about the US election’s all that’s really coming up on tumblr” so I dunno fuck that hypothetical person HERE’S WHAT’S UP WITH US!
Oh god, and I thought the US was getting bad…
What bothers me is when I say, ‘I can stand’ and my would-be helper stares at me with shocked disbelief. What, a person in a wheelchair who can stand? Can’t be! Sometimes I’m tempted to stand up, throw my arms open wide, and yell, ‘It’s a miracle! I’m cured!’ OK, I’ll refrain.
Not only can I stand, but I can walk some. Just not terribly far. For five minutes or so, I can walk like a normal person and fool everyone. After that, my left leg starts to drag and gets weak. Time to use my cane. At this point, I can still get around some. In fact, on my good days, I sometimes walk around on the shorter trails in our county, like Old Dillon Reservoir or Sapphire Point. I move slowly and my leg drags, but I can get around for a little bit.
However, the amount of time I can walk is limited, and it’s only on good days. With multiple sclerosis, my health and functioning can vary widely. There are good days and bad days. Also, I have trouble thinking and walking at the same time. This can be bad while shopping. I wind up blowing my budget, so I generally use my wheelchair.
Thinking that everyone in a wheelchair is paraplegic leads to the thinking that you have to be paraplegic to use a wheelchair. There is one able-bodied person who has seen me walking, looking normal for a full five minutes, and has decided that there can’t be anything wrong with me. She hasn’t spoken to me for the last nine months because I was once unable to walk a half-a -mile to do an errand. I didn’t have my wheelchair with me and it wasn’t a choice that day. I guess she thinks I was faking it and just trying to get out of the errand. This ‘all or nothing’ thinking, either you must be paraplegic or you must be fine, can cause a lot of problems.
This is the kind of thinking that prevents some people I know with MS from using a wheelchair for activities in which it would be beneficial. They decide that as long as they have any ability to walk, for however short amount of time, they will never use a wheelchair. They are afraid people will see them as more disabled than they are.
They are afraid people will look at them with pity. They’re afraid people will think they’re ‘faking it’ if they use a wheelchair when they can walk a small amount.
So many opportunities are lost then. If I would have been afraid to use a wheelchair, I would have missed out on shopping with my daughter for her prom dress. I wouldn’t have missed that for the world.
Sandy Lahman, Disability 101: Not everyone who uses a wheelchair is paraplegic
(via cardiacattack)