Behind Clare's Mind
When I was 16, things with my mental health started to get really bad. I was struggling with anxiety, depression and more, and it all hit me like a bus. I was admitted to my first inpatient stay at a psychiatric hospital.
I participated in so many programs to try and help me get better. I did many outpatient programs that were a couple of hours 3 times a week and also many stays in partial hospitalization where I would go there every day for treatment but come home and go back the next morning. I was started on medicine for my mental illnesses. I have been prescribed so many different pills I couldn’t say how many, it’s probably over 50 at least. I had to keep trying new and more meds all the time because nothing seemed to help me at all and none of them were working. Throughout this time I was admitted to the psychiatric hospital a total of 10 times from the age of 16 to when I had just turned 19.
All of these stays were so difficult and traumatic. I wanted nothing more than to end my life and even in a setting designed to be safe for suicidal patients I attempted to take my life more times than I could count. One of my admissions lasted two and a half months.
An average stay was 5-7 days. I had already been inpatient many times before but this time I was at my darkest place with my demons. I got so many extra restrictions and precautions during this stay. I couldn’t keep myself safe at all. I was watched by a staff member 24/7, they had to be arms length away from me at all times including while I slept, went to the bathroom, showered etc. It was horrible.
I wanted death more than anything I’ve ever wanted. But, then I got the results from a study that I had participated in. It took about 5 months for the results to come in. It was a study for people who had treatment resistant depression, had been on many antidepressants and all of them failed, had received ECT treatment that had also failed, which I had. ECT (electro convulsive therapy) was one of many extremely traumatic things I went through during recovery. For the study, I had to give 45 viles of blood and a spinal tap. When I got the results of the study, I had been diagnosed with a metabolic brain disorder. I didn’t know at the time, but this was the most amazing thing that could have happened to me. The disorder I have is called l tetrahydrobiopterin deficiency (bh4 deficiency). It was also detected that I had no serotonin in my blood at all. The fact that I was still alive was a miracle. This metabolic brain disorder means that I don’t naturally make enough of the molecule in my brain (bh4 molecule) that is responsible for creating essential neurotransmitters; serotonin, dopamine, epinephrine, norepinephrine, melatonin and more.
The doctor for this study started me on a medicine that is usually used in babies with PKU to help build up that molecule in my brain so I could make the neurotransmitters I need to stay alive and be happy and healthy. No one had believed me before. Everyone I met in treatment thought I wasn’t trying hard enough, they told me it was my fault, I wasn’t doing enough and they had all done everything they could, so they gave up on me. I was a hopeless case until my now current psychiatrist diagnosed me with this really rare disorder causing my very intense treatment resistant depression with all of my diagnoses: depression, generalized anxiety, social anxiety, ocd, ptsd and my eating disorder. I never thought I would make it alive past the age of 16 but I am 20 years old now and I am fighting back my demons and battles every single day to stay alive and work towards recovery.
I wouldn’t be alive if it weren’t for that study and my amazing and brilliant doctor who created this study and has helped me more than I can say. I still struggle, of course, I’m fighting my demons everyday but the point is that I have been through hell and back. I’ve been through more pain and unimaginable things than most people go through in their lives and so young. But, I’m alive. I made it. I am still here and I am battling my illnesses every day to stay alive. I’m proof that things do and can get better no matter how bad and hopeless it seems.
I’ve been told by so many professionals that I was hopeless, that I was never going to get better, ECT was my last hope (even though ECT did nothing but cause brain damage and memory loss), and I should just kill myself already. Nobody believed I’d get much better and everyone believed I would die by suicide at a very young age. Despite all of that coming from friends, family, even mental health professionals and doctors and most importantly coming from my own mind most of the time, I survived.
I am a warrior and I will always have this disorder and fight it and my demons everyday but that fact that I’m alive is honestly more than a miracle. It really is proof that just because things seem so unbearably painful, it doesn’t mean you are beyond help and forever trapped in a demon filled suicidal state.
I’m alive, I am so strong, I’ve become very resilient and empathetic and a true warrior. I hope more than anything that my story can reach people and inspire them. I want people to know how much they can go through and still survive. I hope to be an inspiration to as many people as possible.