Invisible Disabilities
by Cindy Samet, professor of chemistry
I have come to learn that the health mysteries I have been living and researching are classified as “invisible disabilities.” Not only are they difficult for the outsider to observe, they are scientifically complex and intertwined, and I hope that these next 25 years—post ADA—will produce collaborations that profoundly change the way we view them.
Medical testing is a double-edged sword for these disabilities, as it can provide confirmation that may lead to empowerment, or it can leave someone who tests in the “normal range” profoundly ill and seemingly crazy. One of the most insidious aspects of this form of invisible disability is that quite often the “gold standard” blood tests that confirm these diseases do not measure what physicians assume they measure.
For example, the terms "fibromyalgia" and "chronic fatigue syndrome" emerged at the very same time that the TSH (thyroid stimulating hormone) test became available. If a patient was in the “normal” range but feeling extreme pain, she would be told she had fibromyalgia, and if she was exhausted, she was diagnosed with chronic fatigue syndrome. It is well known among thyroid researchers that thyroid chemistry is complex and that the TSH test, although sometimes useful for initial diagnosis, should never be used to assess thyroid function.
According to Lennard Davis (Enabling Acts: The Hidden Story of How the ADA Gave the Largest US Minority its Rights), “What raised the stakes was that men and women gathered in that room all shared one thing in common—disability. Almost everyone in the room … had experienced firsthand the discrimination and inequity that can face a person with a disability.” And so it goes with human nature; we can understand an experience so much better if we have lived it ourselves.