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  • Writer's pictureJenny Stamm

Invisible Disabilities, Misdiagnosis, & Missed Diagnoses

Updated: Feb 8, 2023

Being invisibly disabled can be a real struggle, even when just trying to get the care you need. When I was around 20, I literally had a doctor tell me that she wasn’t going to diagnose me with anything else because I already had so much wrong with me for someone who was so young! More recently, my problems with my balance got bad enough to finally get the attention of my doctor(s) and I found myself referred from one doctor to another, from one test to another. I had my brain checked, my muscles shocked, my blood drawn multiple times… and the result was that they have no idea what’s affecting me.

I was reluctantly given the diagnosis “fibromyalgia,” which is a diagnosis that is about generalized pain that can move between body parts and the pain can vary by hour. However, it is often paired with other symptoms such as inability to focus, muscle weakness, and more. This lead to me finding communities that could understand the experiences I’ve had and lead to me finding the terms misdiagnosis and missed diagnosis.

A misdiagnosis is when the wrong diagnosis is given, such as fibromyalgia instead of multiple sclerosis both of which have many overlapping symptoms. A missed diagnosis is when a doctor doesn’t find the reason behind problems, generally giving a clean bill of health when something is wrong. Oftentimes, this is because all of the tests come back normal or because the doctor has dismissed the reported symptoms.

Either situation can cause problems as delayed diagnosis and treatment can lead to symptoms progressing and further complications. In the invisible disability community, both of these situations are extremely common. Nothing is visibly wrong and tests come back negative, so there must either be nothing wrong with the person or it must be all in their head.

Often, people with invisible disabilities were first misdiagnosed with anxiety, depression, or some other psychiatric problem. Now, many with invisible disabilities do have anxiety or some other psychiatric trouble, but it becomes a missed diagnosis when doctors suggest that that is the only thing wrong.

Finding good doctors who don’t dismiss what is wrong becomes vital to those with invisible disabilities and can take many years and trying out many, many doctors to find the right one. It’s possible and I have heard many stories of people finding that one right doctor, but it can take a lot of time and effort to find them.

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