I Wouldn’t Change a Thing.
My Five Year Journey
Daniela Kerr’s Story
“I was fighting to be understood and get the right help.”
Who I Was
Growing up I was a highly sensitive child. I would catch illnesses easily, constantly have stomach aches and headaches, and I was highly emotional as well. I was always a very driven and responsible person - not one to back down from a challenge or take the easy way out. I also experienced considerable misattunement resulting from my unidentified autism and a processing disorder. Despite these things, I had an overall happy childhood. I was a straight-A student, a dancer, a perfectionist, and a leader.
My Trigger
Right before my freshman year of high school, my family moved from California to Michigan. I was struggling to cope, leaving my many friends and a solid foundation in California. Adjusting to a move is hard for anyone, especially the summer right before high school, and I’ve come to understand that it’s especially hard for someone who is neurodivergent. I told my parents multiple times that I was struggling, but they didn’t understand the extent of my struggle and weren’t able to help me through it as was needed.
We moved and I endured three months of intense trauma. It’s hard to describe how difficult it was. It felt like I was an alien on a different planet and it felt like I had lost everything. I lost my friends, my family (in the sense that they had lost my trust), and myself. It felt like I had lost my soul and all that was left was sadness, anger, and pain. I couldn’t make it into school while in Michigan, and I was in a very hopeless state. My condition became so severe that my family decided to move back to California after just a few months.
The Decline
I tried going to school when I moved back, but I simply couldn’t manage getting through a day. The school district notified me that, due to my absences, I had no other choice than to go to school online. I finished four semesters of high school online, only going into the classroom for exams, but it was hard to focus. My mind and body could not keep pushing through and I had to pause my education after my sophomore year.
From the time that I moved back to California, I began having confounding physical symptoms. I would have episodes where I would thrash around, scream loudly, and cry. It felt entirely out of my control. Through the years, I heard therapists describe panic and anxiety attacks, and I knew that what I went through was very different. I was able to watch it all happen to me; I could hold a normal conversation or even make jokes in this state. At that time, I went to my lifelong primary care physician. She talked to me for no more than five minutes and prescribed Xanax. This was the first time I took a medication that did not agree with my body. Not only did I feel drugged, but none of my suffering was diminished and the symptoms seemed unaffected by the treatment.
Other symptoms developed during this time; I had constant tachycardia that got worse when I moved. When I stood up, blood would pool in my legs and feet and I would nearly pass out. I was constantly overheating; breaking into a sweat while sitting, standing, or doing nothing at all. Then another major symptom developed - extreme pain in my chest; pain that has not left, even for a moment, in five years.
During this same time period my parents forced me to go to talk therapy. Sessions would go on for two years as I tried countless therapists who only made me worse and created trauma. I didn’t want to go to therapy (at the time) because things would be assumed about me that weren’t true and I knew that something fundamental had changed within me that couldn’t be healed in this way. It felt like there were two identical rooms in my brain. One that was perfectly fine and one that was completely damaged. The therapists were working in the perfectly fine room the entire time, when I really needed extreme assistance in the damaged room.
The therapists, in summary, said that I was not wanting to get better and not trying hard enough to get better. They told me that I was just suffering from anxiety and that I just had to push through it and live my life “normally”. They said that my parents needed more control over me, when in fact, I needed the opposite. I had lost all control of my life at that point. They told me that I had to go to school. I had to exercise. I had to eat meals outside of my room. I had to fix my sleep schedule. While these are all important things, I simply was not in any sort of place to do them.
I was on pretty much every antidepressant and anti-anxiety medication at some point or another and none of them made the slightest difference. As I continued down this road, I just continued to get worse.
I would fight with my parents constantly. Fighting to be understood and to get the right help. Something inside of me never gave up on finding answers. Even if I didn’t know what was wrong, I always knew what was not wrong. In other words, I knew what was right. I knew that if I couldn’t fight for myself, no one could.
Trigger Two
Two years after we came back from Michigan, I convinced my parents to stop making me go to therapy because I wasn’t depressed anymore. That was true, though I was still physically ill and was doing poorly because of the deeply traumatizing experiences I had with therapists who misdiagnosed and mistreated me.
I love helping people and I feel like I am meant to make change in the world. Therefore, in 2019 I decided to go on a volunteer trip to Ghana, alone. I wanted to go so badly that I wasn’t thinking practically. At that time, I was rarely leaving my house and I suffered greatly every time I did. I went to Ghana and although I could appreciate how fantastic the experience was, I was not well. I barely slept and couldn’t bring myself to leave my room on most days. A bad stomach virus, mixed with the effects of strong anti-malaria medications and all of my existing symptoms created a perfect storm and caused me to return back home after only a week into my three week project.
I later discovered that this was my second trigger. My neurological system was fried. My chest pain and other physical symptoms went through the roof. I was having gastroparesis (my digestive system was malfunctioning). There was physical pressure building in my head. I couldn’t stand for long and, of course, I was terribly unhappy.
The Search
Now that I had concrete evidence that something physical was happening to me, symptoms that couldn’t be talked through, especially with people who didn’t understand me, my parents started looking for answers from physicians, just like I had suggested for years.
I went to at least 25 professionals before finding my current team. I was told countless times that I had too many symptoms for a diagnosis, and some said that I was just highly anxious.
At one point, my parents and I decided to go to Mexico to see a doctor who had helped my aunt diagnose an elusive thyroid issue the year before. She said he was thoughtful, patient and determined to find answers, so it was this Mexican rheumatologist who first suggested that I might have a condition known as dysautonomia.
We went back home and continued looking for answers. I was getting more and more frustrated, gaslit by doctors, and physically more sick. A cardiologist corroborated the Mexican doctor’s suspicions and my parents flew me to Houston for a tilt table test. They confirmed once and for all that my nervous system was malfunctioning and I was diagnosed with dysautonomia in the form of postural orthostatic tachycardia syndrome, or POTS. Unfortunately, their course of treatment was not effective for me, and treating me remotely was impractical.
It felt like years of built up suffering and pressure was coming to a head and I couldn’t bring myself to leave my room or bed anymore. Every attempt to do that in the prior two and a half years had been truly miserable and overwhelming. Staying put was all I could do at the time.
I felt so disappointed. I knew I had dysautonomia but there were so many different symptoms… The fear of not getting a diagnosis that was treatable kept growing. I would drag myself to appointments every week while I got sicker and sicker. These appointments didn’t make things better, and in fact they only made things worse because of the judgment, disbelief, and misunderstanding I frequently experienced. Sometimes the judgment was so harsh that I would lash out at the doctor. This reaction was nowhere near who I am as a person or how I would ever choose to present myself. I was suffering and desperately needing help, while receiving the opposite.
At one point during this process, the physical pressure I felt in my head was becoming too much to bear. I couldn’t sit up anymore and I was constantly seeing spots in my vision. I had a spinal tap procedure and they confirmed I had excess fluid and pressure in my head. I cried with joy after the doctor said this; at least it was an answer. However, the joy quickly disappeared because the spinal tap resulted in a spinal leak, which caused my vision to become doubled and blurry, the spots to get worse, and to make it nearly impossible to sit up without feeling immense pain; like my brain was sinking into my neck. I remained in a lying down position for months. The only amount of movement that I took part in was crawling to and from the restroom.
Around this time I began to scream throughout the day - from the time I woke to when I finally fell asleep. Alone, in front of people, in my home, and in public. We later learned that this was because of my “sticky neural loops”. Basically my brain is predispositioned to get caught in repetitive and hard to break patterns of all sorts, including repeating words, motions, and/or thoughts. This was part of my neurodivergence.
My spinal leak was treated with a blood patch performed by yet another mean and judgmental doctor who suggested that I was faking my symptoms and screaming for attention. After the blood patch, it took over a year and a half until my head felt close enough to normal and I could sit up slightly again.
I was in bad shape; I couldn’t sit up, I couldn’t stop screaming, I was in extreme pain in my chest, I had continued tachycardia, hot flashes, and I couldn’t even grab my own water. At this point it’s fair to say that I started questioning my own sanity and whether I could in fact be making all of this up. I felt like almost every word that I said to the people around me was a lie coming out of my mouth, even when it could be verified as true.
We went to Texas a second time to another dysautonomia clinic. They promised that they had seen it all and they had solution. Long story short, we wasted our time. Theirs was a “one size fits all” approach to treatment and I needed a tailored solution.
We went home and soon after my parents hired a private medical group known for solving tough cases. My parents were trying to keep me hopeful by saying that the team would not stop until we had answers. This group ended up failing us and insinuated that I was crazy - making it all up.
By the time we stopped working with the mystery illness doctor group, I was a shell of a human. I was repeating words and phrases (both were involuntary impulsions), distrustful of everyone and myself, in extreme pain, unable to sit up or move around, screaming all day, and so hopeless. My waking hours were from 5:00pm until 9:00am because resting was so difficult with the levels of sympathetic overdrive I was constantly experiencing. For months I was unable to take care of myself in most ways. There was no brushing my teeth and hair, and no real showers for a long time. Thankfully, my parents were supportive caregivers and they never stopped looking for the right answer.
The Beginning of the End
One weekend day, my dad came across a website of a medical group that specializes in cases similar to mine. He called them and someone miraculously picked up. The next thing I knew, I was meeting the head of my current team; the first doctor to say that I was NOT crazy and the first one willing to bring different experts together to treat my complicated condition. I was quickly diagnosed with Centrally Mediated Neuropathic Pain, PTSD, and Autism on top of the Dysautonomia.
In the beginning, the team consisted of the head doctor (a pain management physician), my behaviorist, and my psychiatrist, with input from a cardiologist. I was so traumatized from my psychologists in the past that I refused working with any in the beginning. My new doctor was patient and worked with me, not against me. The new team tried different medications on me for a year until we found the right ones at the appropriate doses. The process was hard to endure, but once I got on the right medications, I stopped screaming and repeating words overnight, my sleep schedule became more workable and my blood pressure and heart rate were manageable.
I was hesitant with trusting everybody on my team until I started working with my behaviorist. My behaviorist suffers from chronic illness too and understood me better than anyone ever had. The work that she did with my parents in the beginning of our time together changed things greatly for the better. They were able to understand me in a way that they had not before.
Around that time I had to shave my head because my hair was so badly matted and unbrushable, and after that I finally began working on my hygiene again.
When I began to work with my behaviorist, she had a very structured and goal oriented way of doing things. I had a terrible reaction to recovering this way because of my past experience, and she realized that in my case, it would be important for me to control the plan and the pace of it. So we took baby steps and cut them in half and cut them in half again. We spent hours every day talking to each other for many months. Finally, I was able to tell my story to someone who truly understood.
During this period, I wouldn’t leave my room for months at a time, which was only interrupted by in-person doctor's appointments.
Over time, I agreed to talk to a therapist again. It was not easy at first, despite the fact that she was vetted by my team and specialized in working with neurodivergent people like me. I’m pleased to report that in time, sessions with my therapist have become some of my favorite parts of the week.
I’ve also taken part in a group named CHYP, whose goal is to help youth in pain with creative healing. Through this non-profit I’ve participated in group settings and become close friends with a girl who also has chronic pain and illness. It’s been life changing to be able to talk to people who really get it.
Where I Am Today
Today I rarely have pain in my head, my chest pain still sits at an average of 8/10, and I don’t scream or repeat words anymore. I take regular showers, my vision is back to normal, and I don’t doubt if what I’m going through is real or valid. I leave my room at least once a day to visit another part of the house and I have weekly therapy, reflexology/ lymphatic drainage, and yoga appointments. I do art, writing, meditation, reading, and makeup - all things that seemed impossible when I was at my worst.
Here is my message to others going through a similar thing: your thoughts and feelings are valid and you will be okay, no matter what happens. Your journey of healing is entirely unique to you; find whatever healthy modalities work best for you to feel your best. Be kind to yourself and take your time.
I am very much still healing and I have my work cut out for me in terms of what it will take to live my life fully once again, but I am nowhere near the levels of suffering that I once was. I am an entirely different person from when I started this journey. I’ve learned to advocate for myself and have realized just how strong I am. I find that the way I view the world and myself has changed greatly and changed for the better. So much so, that those close to me have asked me the question, “Would you go through it all again to learn what you have learned?”. My answer is no, BUT now that it’s happened… I wouldn’t change a thing.
Thank you to our primary sponsor, Vitassium by Salt Stick.
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