Stories are to be shared
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
Please, invite me to speak. Invite me to be interviewed. I would love to lend my voice to these causes below.
When I became sick with Lyme Disease I was thrust into a strange parallel universe, where my lived experience wasn’t reflected in the information available to me, or to the first round of doctors treating me.
I was misdiagnosed multiple times, the most damaging of those misdiagnoses was conversion disorder, a psychological illness where you manifest symptoms due to an inability to process trauma or stress. This diagnosis continues to impact the care I get to this day, simply because it is on my chart.
When I began reading about others experiences, in books like Pamela Weintraub’s The Cure Unknown, or Katrina Makris’s Out of the Woods, I realized that this was a nearly universal experience for those of us unfortunate enough to have a systemic version of Lyme Disease.
I have now spoken to many Lyme sufferers personally, through connections made in the Lyme community, and by caring for those with Lyme disease in my private practice.
To a person, all of the Lyme disease patients I have spoken with share the experience of medical and psychiatric misdiagnosis, as they were navigating the terrifying loss of function that comes with tick-borne illness.
It is clear to me that our nation needs to reevaluate how we diagnose and treat Lyme disease, and associated tick borne illnesses, and that patient advocacy is sorely needed.
I hope that by sharing my experience I can advocate for Lyme patients who are still out there in the wilderness of misdiagnosis, Lyme patients who have been diagnosed but can’t afford treatment, Lyme patients who were treated too late for the infection to be turned around, who now are sentenced to a lifetime of pain.
In addition, my personal and professional experiences have brought to light just how broken the mental health system is.
Funding for community mental health has been cut so many times over the past 50 years that it is operating on a skeletal budget. Reimbursement for inpatient stays has also been slashed, leaving hospitals to discharge patients before they have any chance of finding true stability.
Families are left to care for people in the grips of psychosis with no safety net. Restrictions around involuntary care are so tight that many who struggle with psychotic episodes cannot get any treatment when they are suffering from terrifying delusions and hallucinations.
It isn’t right, and it isn’t fair to their families, or to local sheriff and police departments who have become the frontline for those with mental illness, despite the fact that they lack the training and resources.
Something has to change. If my story can support that change I am happy to lend my voice.
My story also deals with domestic violence, which in my case was heavily tied to mental illness. My first husband’s anxiety, depression, and mania led him to engage in controlling and abusive behavior. I became aware firsthand of how confusing it is when a person is loving at times, and yet engages in abusive behavior. It wore me down little by little until it was hard for me to see myself clearly.
I had moments where I deeply understood why so many women can’t just leave. Sometimes my moments of clarity came at a time that I was financially dependent on him and couldn’t afford to leave. Sometimes the desire to hold our family together was stronger than the desire to preserve my own dignity.
Leaving is a hard decision, a complicated one, and is being made after one’s sense of worth and identity have been diminished.