Diabetes isn’t a choice, and neither is mental illness.

Many of our nation’s people in uniform experience mental health challenges in the form of PTSD, depression, and traumatic brain injury, among other things.  I initially planned to research and write a post for Memorial Day about mental health in the armed services, but when I discovered that one of the biggest barriers to treatment among this population is stigma, I decided to write about something in my wheelhouse: stigma in my own mental health journey.  And further, the way that my understanding and experience of stigma changed when my mental health record was wiped clean in exchange for a neurological disease.

A Brief History

I was diagnosed with and medicated for ADHD when I was 8 years old.  I added depression, OCD, and generalized anxiety to my psychiatric resume in high school and have consistently taken a variety of antidepressants and anti-anxiety medications since.  I received accommodations for extra time on tests starting in high school and was ashamed that I needed these because I couldn’t focus or stay awake even in the most average, people-do-these-things-all-the-damned-time, situations.  I was perceived to be “lazy” by my high school teachers and to have an “unfair advantage” by nosy parents who found out about my accommodations when I was late to track practice because I was finishing a test.

I kept quiet about my “crazy” because people say stupid things and words can be hurtful.  I wanted to advocate for people like me but was too ashamed to come out about my struggles for fear that I would be admonished as I was in high school, by perceived enemies and allies alike.  I created a cocoon of isolation to protect myself from stigma.

Scratch That: A Neurological Diagnosis

It’s February 2017.  My husband and I sat in my new neurologist’s office following my sleep study while the neurologist explained that my results showed I was “flagrantly narcoleptic”.  I cried with relief and disbelief.  This was my Diagnosis Day.

I asked 1000 questions, shocked that there was a single word for all of my symptoms.  I knew that depression didn’t explain my collapsing episodes but previous practitioners convinced me that whatever couldn’t be assigned a diagnosis code – and even some of the things that could – must be something I was choosing to do to myself.

Before leaving the appointment my medical chart changed forever. I got a clean bill of mental health in exchange for a neurological disease as my neurologist struck a line through “depression”, “anxiety”, and “ADHD” and wrote “narcolepsy with cataplexy”.  We would revisit those diagnoses later, but until proven otherwise, he explained, those were all misdiagnoses for narcolepsy.

I felt like the weight of the world was taken off my shoulders that day.  I felt the relief of finally being SEEN by the medical profession for the first time in my life. And, wait for it, the relief at not having a mental illness. Yes. I would rather have a neurological disease than a mental illness, even though the symptoms can manifest in similar ways.  Our society viewed me as “crazy” before my narcolepsy diagnosis, and “sick” after the diagnosis.  Why?

How My Experience Changed

Imagine walking around with a troll.  A big, ugly, smelly, disgusting troll a la HP and the Sorceror’s Stone. When viewed through the lens of mental health, I was treated as though I was holding hands with the troll and that I could be healthy if only I chose to let him go. In neurology? The troll is chained to my ankle.  My entire life I was treated as though I was doing this to myself. {THAT’S THE STIGMA OF MENTAL ILLNESS.}  But the truth is that anyone suffering from mental illness, chronic illness, physical illness, etc is CHAINED TO THE GODDAMNED TROLL.

Nobody tells a person with a neurological condition “you shouldn’t be allowed extra time on that test”.  Nobody tells a person with a brain tumor that their anxiety isn’t real and that they should substitute kale and essential oils for their medication.  Nobody tells a person with muscular dystrophy that they are lazy for not getting out of the house.  And nobody tells a person with diabetes that they should exist in the world without their insulin.

I want to live in a world where we treat patients with brain illness the same way that we treat a person with diabetes: with trust and respect about their story.

Stigma is dangerous.  Stigma is isolating.  Stigma keeps people from getting the help that they need and deserve, and from having a community while they figure things out.  The next time someone tells you about their struggles, try to see past what society taught you, and all of us, so that you can see the PERSON in front of you.

Check out my dear friend Rachael and her work with first responders here.  Thank you, Rachael, for sharing some notes when I was planning for this post to go in a different direction!