Long COVID patients already struggle to access SSI. Now, Trump's Medicaid work requirements could see chronically ill and disabled people without documentation lose coverage
Sadly, the only recognized test by SSDI to prove myalgic encephalomyelitis caused by long covid is a 2 day cardiopulmonary exercise test. It is $3000 out of pocket and causes serious post exertional malaise (PEM). Mine lasted 4 weeks after the test. Only people who can afford it, have access to it (limited places offer it), and are willing to damage their body will get the documentation they need to prove their condition. It’s another injustice for us.
Exactly. Mine was about $4k, after travel, lodging, and food were added to the test cost. And it went on a credit card. I’m privileged to have had that much available credit, but it’s still not paid off three years later.
You are right! I didn’t include travel, lodging and my husband missing work so he could take me and literally help me walk to the car. Pro tip- take a wheelchair. I wish I took one.
This is so scary . I’m so afraid of getting permanently worse from triggering PEM since I only became homebound 7 months into long COVID after beginning to go on daily walks again
The fact that I had to do it is shitty, but there are upsides to the test. For the first time, I had a test to prove and validate my symptoms. I know longer waffle if this is in my mind. It was very freeing. I took it to every doctor & had them comment on it in my medical records. The place I went, Workwell Foundation, wrote the report so that it broke down how many energy units I’m typically allotted in a day, and then gave examples of on average how much a shower takes, making your bed, eating breakfast, 20 minutes on a computer, etc. I basically would maximize my daily allotment before leaving for work. I now had a way to explain my disability backed by my data, not just an article in the spoon theory. So many of the work ups, labs, gaslighting by doctors, & testing led to PEM. At least this time I was in control, got something out of it, and was able to prepare my family for it.
The doctor contracted by the SSA to examine me for my long COVID-related SSDI case spent a total of three minutes with me, no exaggeration. When my husband wheeled me into the room in my mobility chair, the doctor turned, looked at me, and said, “you’re a little young to be in that thing, aren’t you?” It was, start to finish, the most humiliating medical experience of my then 48 years of life.
I’m so sorry , that’s awful. I wrote in another piece about my first experience asking for a wheelchair at a hospital when I realized my doctors office was across the building and I wouldn’t be able to work. The receptionist first lied to me and told me they didn’t have any wheelchairs WHILE another employee grabbed me a wheelchair from RIGHT behind her, then she tried to question me whether I rly needed it :/
Idk why in this day and age it’s such a mysterious concept to ppl that not everyone who needs a wheelchair looks one particular way
Ed Yong's reporting about long Covid taught him that "as energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity." Your research and writing here on the barriers to adequate care in this country for long Covid sufferers bears that out.
I think it’s way past time that we start calling the American regime genocidal. Not only because it is rounding up people into concentration camps in this country and abroad, but because the sort of foundational logic driving policies is that only “healthy, productive, working” people deserve to live. Everyone else is marginal or disposable. It’s horrific and sickening, and needs to be called out!
This reminds me of the rules placed on abortions, and how it affects women in all sorts of situations. That's the whole point: control of women's bodies. In this case, the whole point is to make American even more cruel and harsh. It's to show no mercy to anyone harmed by this rotten system. It shows once again that Democrats aren't an opposition party. We need an alternative who is willing to fight for the working class, including for public health and those with long COVID. I have seen evidence the Green Party is that party since Jill Stein spent time pandering to anti-vaxxers who are part of that base they're trying to attract. That said, it's a small party and if people who value public health entered in, they could maybe change the focus and improve things. Also, Stein is just one person. She's not the party. We also need better and stronger grassroots activism. Nothing will change on its own. People have to fight for it.
Sadly, the only recognized test by SSDI to prove myalgic encephalomyelitis caused by long covid is a 2 day cardiopulmonary exercise test. It is $3000 out of pocket and causes serious post exertional malaise (PEM). Mine lasted 4 weeks after the test. Only people who can afford it, have access to it (limited places offer it), and are willing to damage their body will get the documentation they need to prove their condition. It’s another injustice for us.
Exactly. Mine was about $4k, after travel, lodging, and food were added to the test cost. And it went on a credit card. I’m privileged to have had that much available credit, but it’s still not paid off three years later.
You are right! I didn’t include travel, lodging and my husband missing work so he could take me and literally help me walk to the car. Pro tip- take a wheelchair. I wish I took one.
The place I went (Ithaca College in upstate NY) wheeled me in and out. I didn’t particularly need it, but they insisted ☺️.
This is so scary . I’m so afraid of getting permanently worse from triggering PEM since I only became homebound 7 months into long COVID after beginning to go on daily walks again
The fact that I had to do it is shitty, but there are upsides to the test. For the first time, I had a test to prove and validate my symptoms. I know longer waffle if this is in my mind. It was very freeing. I took it to every doctor & had them comment on it in my medical records. The place I went, Workwell Foundation, wrote the report so that it broke down how many energy units I’m typically allotted in a day, and then gave examples of on average how much a shower takes, making your bed, eating breakfast, 20 minutes on a computer, etc. I basically would maximize my daily allotment before leaving for work. I now had a way to explain my disability backed by my data, not just an article in the spoon theory. So many of the work ups, labs, gaslighting by doctors, & testing led to PEM. At least this time I was in control, got something out of it, and was able to prepare my family for it.
The doctor contracted by the SSA to examine me for my long COVID-related SSDI case spent a total of three minutes with me, no exaggeration. When my husband wheeled me into the room in my mobility chair, the doctor turned, looked at me, and said, “you’re a little young to be in that thing, aren’t you?” It was, start to finish, the most humiliating medical experience of my then 48 years of life.
I’m so sorry , that’s awful. I wrote in another piece about my first experience asking for a wheelchair at a hospital when I realized my doctors office was across the building and I wouldn’t be able to work. The receptionist first lied to me and told me they didn’t have any wheelchairs WHILE another employee grabbed me a wheelchair from RIGHT behind her, then she tried to question me whether I rly needed it :/
Idk why in this day and age it’s such a mysterious concept to ppl that not everyone who needs a wheelchair looks one particular way
Ed Yong's reporting about long Covid taught him that "as energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity." Your research and writing here on the barriers to adequate care in this country for long Covid sufferers bears that out.
I think it’s way past time that we start calling the American regime genocidal. Not only because it is rounding up people into concentration camps in this country and abroad, but because the sort of foundational logic driving policies is that only “healthy, productive, working” people deserve to live. Everyone else is marginal or disposable. It’s horrific and sickening, and needs to be called out!
It's so disheartening to see the level of societal selfishness applied to the most vulnerable. Thank you for continuing to shine the light on it.
This reminds me of the rules placed on abortions, and how it affects women in all sorts of situations. That's the whole point: control of women's bodies. In this case, the whole point is to make American even more cruel and harsh. It's to show no mercy to anyone harmed by this rotten system. It shows once again that Democrats aren't an opposition party. We need an alternative who is willing to fight for the working class, including for public health and those with long COVID. I have seen evidence the Green Party is that party since Jill Stein spent time pandering to anti-vaxxers who are part of that base they're trying to attract. That said, it's a small party and if people who value public health entered in, they could maybe change the focus and improve things. Also, Stein is just one person. She's not the party. We also need better and stronger grassroots activism. Nothing will change on its own. People have to fight for it.