The casual remark, “You seem perfectly fine to me!” bothers me (and others) because eligibility for Social Security Disability benefits requires proving we are not fine. In fact, we must prove that we are disabled, which is no small burden when we “seem perfectly fine.”
An acquaintance of mine recently remarked, “You seem perfectly fine to me.” When I reviewed all the things wrong with me at that very moment (a lot), I struggled with how to respond. There was not enough time in the world to fully explain what living with MS means. To top it off, MS is not my only health issue. (I also have Sjögren’s, chronic bronchitis, and arthritis, to name a few.)
Although we may look fine, we know we are not. We often go out of our way to make sure we don’t look as miserable as we might feel. Weakness in America, in particular, is despised. Many people with MS and other disabilities may be able to do certain tasks such as walk or work, but it is possible that they are struggling as well. Not all chronic illnesses and disabilities are visible.
Why ‘you seem fine’ can be offensive to people with disabilities
This time I reflected on why “You seem perfectly fine” represents a very real problem for people with MS and other chronic illnesses. Becoming officially disabled is not a one-and-done process. People with disabilities like MS must prove our ongoing disabled status. MS is a Listed Condition for Social Security eligibility. This does not mean that “just” having MS qualifies for Social Security Disability Insurance benefits.
The validity of our status as officially disabled means life or death for us because we can’t work. It devastated me when I could no longer work. We are not shirkers, lazy, scamming the system, or any of the other negative assumptions about people on disability.
A reviewer of our disability status might also decide that we “seem too good to be disabled” and cut off our income (aka benefits) if kindly acquaintances perceive us as “perfectly fine.”
Being judged “perfectly fine” endangers more than “just” my income for food, shelter, and everything else. Losing my disabled status would mean I am no longer eligible for Medicare. Without Medicare, I would no longer able to afford medical care. I won’t even comment on health insurance at this point.
I pay $$$ for the supplemental 20% gap coverage (Medicare only pays 80%). Plus, I buy extra coverage for all of the deductibles and copays. I can budget for that; I can’t budget for the random hospitalization for an exacerbation.
Medicare Part D for medications means disease-modifying therapy for people with MS. DMT stands between stable MS and potential disastrously deterioration from unchecked MS disease activity.
We need a change of assumptions
We must somehow change this belief that disabled people must look sick. Cognitive issues are invisible disabilities and are devastating all the same.
I wish I could say, “Tell people you have MS,” to maybe help change minds about what MS disability really means. I can’t. Someone you tell is certain to respond with disbelief because, “You seem perfectly fine.”
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