I want to be the crazy one…

The main mental health diagnosis for members of my family is addiction (Substance Use Disorder). We have plenty that have lived with that affliction scattered through all generations. Depression often an underlying mental health factor. I never really had any diagnoses. For anything. Even the disorder that overtook my life at the age of 8. I had to fight for years to have a doctor write in my chart this diagnosis: Cyclic Vomiting Syndrome (CVS). Maybe he had to cross out ‘crazy’ to record it. I was crazy because I vomited inexplicably and uncontrollably for 20 hours at a time and then after a break of 24-48 hours it would cycle and begin again. It could go on for weeks before the cycle broke, leaving me incredibly weak and often struggling to rebuild my digestive life. No one had really heard of such a thing here in the rural west. And truthfully, not many knew about it outside of a small medical community that was studying the syndrome. CVS was not described in medical literature until the 1980s. It is an extremely rare and not well understood disorder. In simple terms, it is a stomach migraine. There are aspects that follow the course of a migraine that causes headaches; sensitivities to light and smell, specific duration, pain that seems unbearable. The main population affected are children. Most children grow out of the vomiting and the CVS morphs into regular old head migraines. There is a small subset of children that do not outgrow the syndrome and it continues into adulthood. I won that one, I am really unique.

I waited for years while they studied and worked toward publishing adult treatment guidelines. Why? Because I was an experiment for every practitioner that tried to treat me. With no published medical guidelines it was always a crap shoot if I went to the ER for pain and vomiting mitigation. I would ask for the treatment I knew would work and be told I was a drug seeker and denied specific medications. ER doctors would want to ‘try’ something else. I was treated and released in the middle of an episode because the ER was empty and they wanted it cleared for cleaning. I had protocols put in place in my chart at the order of my primary care doctor and still they would be overlooked. I had to file a grievance to point out that my orders were not being followed. The hospital circled around the doctor that released me in the middle of my episode which made the ER feel less safe than it already had. I discovered I was crazy because I thought medicine would cure me.

I am not one for pharmaceuticals. I have strong opinions about the over prescribing and combining of medications that I believe contributed to my sister’s mental health issues and long term addiction to opioids. Her reliance on and true belief in the magic of drugs led to her ultimate addict death when she began using heroin. Despite my mistrust of ‘pharma’ and well, doctors who will not listen; the truth is physical pain will make you seek relief, even from things you don’t believe in. Writing this I have to admit that part of the strength that people see in me was born in the bathroom. Or while lying for hours with no concept of anything but pain and the tiny belief that relief is only a few more hours away. I dread those days. But I have steeled myself and even trained for them. I do not rely on any medications. They do not work. I have a breathing routine. I know what small things can bring relief and I can make myself do them even in intense pain. I attempt to keep the pantry stocked with replenishing fluids. I finally have a doctor that supports me with what I have requested. I have a standing order for infusions for every day of the year which lessens the anxiety I live with around my disorder. The nurses at the Infusion Center know me and understand my needs. They take care of me with loving compassion. For the first time in 54 years I am in charge of my disease.

It has taken me many, many years and much self reflection to understand my triggers - physical and emotional - and to accept that I have different self care needs than others. Stress is a huge factor. And stress is what ultimately led me to both my addiction and the breakdown of my mental health. Both my mother and my sister Allison struggled with and were diagnosed as manic depressive or bipolar - the ‘name’ changed but the disease remained the same. Their struggles often ruled my life and I did actually have that thought - why can’t I be the crazy one? That is the humility I have gained through my own addiction and mental health crisis, it’s not easy or pretty on either side.