Invisibility and Illness

Posted: June 21, 2018 in Uncategorized
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Very few people actually like going to the doctor.  In Western culture, though, it has become the expected norm to visit a physician for the diagnosis and treatment of medical illness and a mental health provider if the issues are believed to be psychological. Since this practice is so much a part of our culture – since we are nearly completely reliant on medical professionals for our well-being – it would be reasonable to assume that those charged with our care would have a greater-than-normal empathy and compassion for their patients.  In particular, when one of those patients is diagnosed with an illness that is seen as “invisible” or that has a strong stigma attached to it, it would seem that the medical community would offer additional, more focused support.

I have five of those illnesses/disorders, each one more stigmatized or “rare” than the next.   What I’ve discovered over the last three or so decades is that health care professionals  not only don’t understand – or try to understand – those things they seldom see, they often perpetuate the stigma society attaches to them.  Care is then delayed for people who are dealing with symptoms that don’t have a ready explanation and sometimes, out of fear, those people will not seek help or treatment and never receive care.

Although I have experienced this many times over the course of the last 30+ years, it was never more evident than after I was diagnosed with simple and complex partial epilepsy (recurrent seizures now called focal aware and focal impaired awareness seizures, respectively).  Although these are the most common types of epileptic seizures, they are not the kinds of seizures most people think of when they think of epilepsy.  In fact, with focal aware seizures, an observer would probably never know a seizure had occurred because these manifest as subjective symptoms – an odd smell, a visual hallucination, hearing words spoken as gibberish. The signs of a focal impaired awareness seizure are more evident, but sometimes resemble drunkenness or mental illness.

I became an expert on my own seizures and medication because even my neurologists questioned their validity. Few would commit to calling them epilepsy, even though anti-epileptic drugs worked to eventually control them and many were “classic” partial seizures. I was asked repeatedly about my drug and alcohol use (I never used either) and whether or not I had any psychiatric diagnoses.  I went through a 2-year period when I was having hundreds of seizures a day; I couldn’t work, couldn’t drive, and ended up in the hospital multiple times. Still, the neurologists and general practitioners I saw wondered if these “episodes” were, instead of seizures, tied in with my depression.  During this time, I became more withdrawn and more depressed; I was beginning to feel invisible to everyone and without their help, I was not going to get better.  I also feared the stigma associated with both epilepsy and mental illness; there were times when I wished I’d been diagnosed with something more “visible” – even if it created more of a burden for me – that people could see and accept.

After many years controlled on medication, my focal seizures have returned with a vengeance.  My current neurologist was hesitant to make a medication change – “if it works, don’t fix it” (except that it didn’t) – and wanted me to ride them out to determine whether they were “really” seizures or just stress.  I’m a much better advocate for myself these days and I pushed for a medication change, which I got.  My seizures did not fully stop, but they have been significantly reduced.

I am no longer quiet about my epilepsy or my depression.  And if asked, I’ll talk about what it’s like to live with complex PTSD or a Chiari Malformation.  But there is still a diagnosis or two only my closest friends know about and which I’ll likely never openly discuss. Because there remains an intense stigma attached to things people don’t understand. And when people believe the stigma, they stop seeing the person.




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