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Six months ago I showed up at the door of a woman I had never met . I sat on her couch and could not speak. I was swollen, desperate and lost. She called me into her room to lay down on her bed after which I shamefully informed her that I had overdosed. She calmly took me to an emergency room where I was admitted and sent to a psychiatric institution. It was the second overdose that week. A week before I showed up at an emergency room myself after having taken what I counted as 60 klonopin. The ER doctor said the toxicology report was negative and sent me home after testing. I checked the bottle upon returning, there was only one of 90 pills at .50 left. I am unsure of the details . I remember very little of both incidents. I was released with the diagnosis of suicidal ideation.I stumbled home . I remember bits and pieces of a conversation with a friend. “They released me I will be fine. I don’t know why no one believes me. I can’t handle it . I am very sick.”   It was roughly the 6th time I had swallowed a bunch of pills in desperation. It was the only time I really understood why.  And so did this stranger whose door I knocked on.

 

She had messaged me after seeing a post in a group we belong to. After decades of searching for answers to what had been stealing my life, I was currently seeing the same doctor as her.  You should visit one day, she had written me in  a message through facebook. I have very little memory of that exchange . I have very little memory of many events in my life but especially January through April of this year.

I remember my interview upon arrival into the institution. “Gaslighting, I cannot handle anymore.” The doctor asked by who. I mentioned family members who did not believe my illness. Truth is I had been gaslit by the medical system for decades. It would not end there.

 

Beginning in November of 2017, symptoms that would visit once in awhile now became permanent residents. Symptoms that became so severe I began seeing integrative doctors and psychiatrists.

For a long time before,  I accepted my life as a professional patient. I had a different diagnosis with every doctor I saw. Many were psychiatric labels to explain mental and emotional problems.

Around the age of twenty one,  I began seeing a therapist for the first time and told her I needed to be punished.”What for ?”  I had no real answer for her. I cried every session and could not speak.  I had horrible bouts of irrational rumination about this. “You have obsessive compulsive disorder , generalized anxiety disorder and clinical depression. You must be on xanax or I will not be able to treat you any longer”.

 Two years later my OCD disappeared.

I lost close to thirty pounds. . I was unable to eat and diagnosed with anorexia nervosa ,starving myself due to fear of gaining weight. I assumed doctors were right, even though I explained how I had NO appetite. My size 0 pants told them about a traumatic past and how I was starving for attention. To be fair, I was . However, not by not eating. I had begun years before trying to get doctors , friends, family to hear me . Something was very wrong.

Receiving all these different labels to explain my behavior, physical status, and emotional instability I assumed I was just in denial. Doctors could not be wrong. A year later after accepting anorexia , I gained weight and began eating regularly. In fact, I gained more weight than ever. I was a size 6 and perfectly happy with it. I would like to say it was good therapy that helped, but it was just regaining my appetite.

In the next twenty years symptoms waxed and waned. I would be hit with some for a month and then they would disappear, others were consistent. Nothing was predictable. Life became increasingly difficult. Explanations for my behavior became harder to find. People lost patience. Doctors dismissed me. I thought more and more about running somewhere, anywhere to escape what was occurring. And I did. Often. In fact it became an “addiction”. Travel brought me some peace. I would go somewhere where the sun was shining and find glimpses of myself again.  Rumination would stop, crying would stop, suicidal thoughts would stop, panic at night would stop, my hair would start growing, my face and body would lose swelling. My brain would stop burning and headaches would cease. Naturally, I ran away . ( I call it running away as I was told by others I was trying to escape problems.)  Yes, and it worked. Over there was much better than here. 

Back in my home, my hair would fall out and grow back. I would wet the bed . I could not breathe well. I suffered from unrelenting fatigue, day and night sweats, rashes, rumination, intolerance to cold, pain, headaches, severe depression, paranoia, terror, suicidal thoughts, irritability , inability to learn new things, inability to complete tasks, overwhelming rage, anger, fear, insomnia, sleeping too much, food sensitivities, irrational thoughts, separation anxiety , grief and more. I lost friends. I lost the trust of family. I screamed in emotional agony many times. I wanted to die. But, it was not I who wanted to die. It was a thought. A dark thought that plagued me.  A dark thought after which a stressful event or fight, I found myself losing myself and giving into.

 

I was struggling to live . Every coping mechanism I had , exercise, traveling, begging people to listen, was created to survive.

 

I’m not crazy, something is wrong physically. I remember telling a therapist in an outpatient program about 10 years ago. This year I read my records from that time.  Preoccupation with physical illness. Obsessive thoughts about physical symptoms.  Yes, 8 years ago when I found myself having lost my memory, ability to control emotions, the ability to run, skills as a teacher, will to live I became preoccupied with finding out what was wrong. I knew this was not just a manifestation of trauma as I had been led to believe by many therapists.  While I believe trauma plays a huge role in sickness this was very physical and needed physical treatment before continuing in therapy programs I had become a prisoner of without parole.  Basically, you are in need of therapy for the rest of your life so you can use therapists rather than others to get your needs met.  You’re not working hard enough. You don’t know how to live.  This is what I was told and continued to believe my whole life. I wondered what exactly others did that “knew how to live.” They went to work, went to exercise after or watch tv, cooked dinner and got ready for the next day. This was what I discovered many did. My life “that I did not know how to live” seemed much fuller. But, I struggled through all of it.

 

I remember looking back at my childhood to try to understand what could cause such suffering and dysfunction in a person. It did not match . I voiced my concern many times to therapists. I wasn’t heard.  When you are treated like a patient , you begin to act like a patient. This quote from Francis Farmer , a Hollywood actress resonated with me greatly. I learned of her life and related. I felt misunderstood, misperceived and mistreated. This “victim” mode therapists accused me of was enhanced by them . I felt victimized . I felt mute. I felt I was screaming to be heard in every which way and no one was listening.  Around the age of 18, I had purchased the book Screaming To Be Heard by Chirsitane Northrup, seems I was already searching for answers.

 

 For decades I attended therapy every week. I was in and out of part time day treatment 3 times a week after work. I attended coda, na, and aa.(I was not a drug addict or alcoholic but doctors and family members in their frustration told me I needed more treatment). I will rephrase this, I had become very dependent on Klonopin  (physically) and when going through a terror filled episode or rage took handfuls to stop it. And it would. I attended  spiritual based programs , alternative healing modalities. For a patient who was “resistant to change”, I sure tried hard to fix whatever was going on.   There was something very wrong with me.  I was told constantly I needed to “do the work” to get better. After asking therapists what this “work” was they would say this . I had no idea what this was expected of me as I was obliging with everything they asked and then some.

It was as if they had some secret about how to be mentally healthy and I wasn’t privy to that information.  Yet, here I was working for twenty two years in the same job. Pushing myself to run daily, and when I could no longer run due to falling, I threw myself more into dance. My day was work, dance class (two hours) and home to sleep. I pushed my body beyond what it wanted or needed and paid  later . I had no diagnosis, therefore I had to conquer my mind, my pain,  fatigue was only created by me. This is what I was led to believe and follow , like a good patient.

 

Something going on with me had been missed, I was sure.  And beginning 8 years ago when symptoms went crazy , so did I  Raging began. Irritability. Anger. Frustration. I was seen as not trying hard enough in therapy once again. I searched endlessly for doctors who still told me I was fine. I started to take my health in my own hands. I requested all medical records everywhere I went. I learned to read them. I learned to make connections on how the body operated. I learned that there was much more than a pill to ease suffering. I learned that Doctors are not god. I learned that mainstream medicine had failed me and thousands of others.

 

In November of 2017, I became dizzy at work and I had no way of standing up without help. My principal had to come and help me get home. In the next few weeks I stopped walking and talking. I began hallucinating, constant derealization and depersonalization. I was in terror nightly, unable to breathe again, and having severe adrenaline rushes.  Some family ignored it, told me I was crazy , friends stepped away. I was left in a state of psychosis and had to maneuver myself out many times. I was left bed ridden 75 percent of the time. The other 25 percent I found a way to get to doctors who looked at the body as a whole rather than symptoms. I knew that after a lifetime of suffering, I was on my way to finding answers and healing.

 

Diagnosis: Chronic Lyme disease.  I spoke to psychiatrists who understood this and doctors. “You have been suffering from systemic inflammation, including your brain.” I thought for sure everyone would be as happy as I was that I found what was wrong. Instead, I heard “Oh please it doesn’t exist. You have a million excuses. You have a million diagnoses , get some help.”

I was devastated but hopeful for the first time in my life. I began communicating and hearing the stories of others like me. “The psychiatric system is a joke”, “Me too”  ,“I lost everyone and everything”, “Treatment is too expensive” , “ We are left to die.”  I witnessed many giving up and taking their lives. Suicide is the number one cause of death for lyme patients. With an inflamed brain hurting neurotransmitters and being abandoned by everyone, it is not difficult to understand why.

 

Unfortunately, I got sicker and sicker with treatment.  I vomited, could not leave my bed, had severe reactions to food, lost hair, lost weight, gained weight, felt intense burning throughout my body and brain.

 

Until I moved. It was March. I finally started making some progress. The sun came out and I was out of bed. The sun came out and I felt strangely at ease just like when I traveled.  No racing heart. No suicidal thoughts. No panic. No crying. I had no idea why but I enjoyed it. I began socializing a bit, even though I found it hard to walk sometimes. I had been isolated from humanity for so long and now wanted to be around them.  I began meeting myself for the first time in decades. And life was something I wanted to be included in.

 

In October 2019, I began relapsing. I started to see a new integrative doctor, closer to my house. Diagnosis – Chronic Inflammatory response syndrome.  I was suffering from toxic mold poisoning.  I had been suffering from it for decades.  My relapse was due to moving into another home with mold.  CIRS can go hand in hand with chronic lyme disease. They are both biotoxins and if one is susceptible to one illness they are susceptible to the other. Mold was keeping me sick. Mold made me crazy.

After leaving my first home, I found myself begging for help to live, I had finally seen life without suffering and psychiatric labels and I wanted to stay here. Right here. I whispered to myself constantly when the toxicity inflamed my brain and body . I am here. Right here . Hold on. I am right here and I love you.  I was constantly told that I needed to love myself in order to get better by psychiatrists. I remember telling them “I do, or I would not be here. I am fighting every single day. “ But, I began believing that I was hopeless and a lost cause. The condition of psychiatry was perhaps the most detrimental.

I struggled at first with the idea that mainstream medicine had failed me. I struggled with the idea that I was anything but these psychiatric diagnosis. Until I started treating and seeing toxicity fall from my brain and body . Until, I finally felt peace . Unfortunately, I was not believed by family and found myself arguing in a home that had hurt me, I found myself raging in a home that had hurt me. I found myself losing touch with reality in a home that hurt me and relying on old coping mechanisms to escape.

 

I remember very little. I remember being in great emotional agony that I was not believed. Mold also hits the brain , inflaming it , making everything very big. After fighting with my mother about this home and defending the fact that my illnesses were true for the last two years, I became homeless and desperate. I would go back to this home when completely defeated and beg to be believed. The inflammatory response was instant. I no longer made sense. Neither did my actions. I cannot say I wanted to die. I cannot explain overdosing anymore , except an act in the midst of insanity from a person struggling to be heard and to live.

 

Debbie, my friend from Toxic mold support groups, understood. She let me in. Saved my life. She too had suffered from exposure. She heard me and witnessed me without judgement. There are many like us. They are found running to safety , begging to be heard in psychiatric wards, yelling at doctors, bed bound, abandoned by everyone, and worse no longer here.

 

I have been healing. In the past few months,I met a woman I didn’t know. Myself. After layers of toxicity fell again, there I was. I now work to let go of the emotional side of this.I do not speak to members of my family and some choose not to speak to me. “ I am not interested in your illness, it is not my problem, you are always sick. It is too much for me. “  Yes, it was too much for me also.

Gaslighting was an accurate word, that I used with this psychiatrist in the institution I was sent to. She, not believing my illnesses labeled me with Delusional Disorder. Today, I am not defeated by that as I know the psychiatric model is outdated and they are only doing what they learned.  They must do better, we all must.

 

 

Stefanie