A couple of weeks ago, I wrote a piece for the Mighty about how long-haulers, those who remain sick after getting COVID-19, will likely face many of the same issues people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) deal with when applying for disability benefits.
Having a contested illness, such as ME/CFS or chronic COVID, makes it harder to access disability benefits, but not impossible. One of the most eye-opening aspects of applying for disability for me was that the diagnosis matters less than how your condition prevents you from working. It is not enough to say, “But I have a devastating neuro-immune disease! Give me disability benefits!” The same applies to long-haulers – having evidence for disability matters allows people to bypass debate about the disease.
My piece explores different types of evidence for disability that people with ME/CFS use to win disability cases. Although it is unclear if long-haulers will end up with ME/CFS, there is a lot of overlap between the two diseases. Many of the tests we use to support disability claims could be used by long-haulers, including 2-day CPET, tilt-table testing, and psychological testing.
My piece also explores the layers of uncertainty facing long-haulers. Because the disease is so new, it is impossible to predict the trajectory of long-haulers. This ambiguity complicates disability applications because doctors cannot say if and when long-haulers will recover. I explore ways of piecing together short-term disability benefits while preparing applications for longer-term sources, such as Social Security Disability Insurance (SSDI) and long-term disability insurance offered through some employers.
It is painful to watch legions of people arriving on the disability doorstep, virtually overnight. I feel deep compassion for longhaulers when I think back to the uncertainty and fear I had about my ability to earn a living and survive. My piece is one I wish I would have read when I first started on my journey to get disability benefits.
There is so much more I could have said in this piece, but I needed to stick to the essentials. I interviewed a disability attorney who specializes in long-term disability cases (LTD) and Workwell Foundation. They emphasized the importance of objective, measurable evidence for disability when dealing with a virally-triggered chronic illness, such as ME/CFS and chronic COVID.
I hope this piece might help both longhaulers and people who have been newly diagnosed with ME/CFS.
Frozen in Amber 