The Truth About Me...

The truth about me…

This will probably be the most real post I’ve written since I started blogging.

Although I’ve been blogging about mental health, I’ve been blogging about general aspects of mental health with my personal experiences thrown in, but have shied away from sharing my own personal battles and struggles in too much detail.

That needs to change.

As someone who has experienced what it’s like living with a disabling mental illness, I owe it to the community to share my story in its entirety, to show the world what living with mental illness is really like, and to help de-stigmatize the world we currently live in.

So, let me start over…

My name is Sandra Lee.

I’m a 34 year old woman, originally from NY but currently living in Pittsburgh, PA.

My full time job is a claims adjuster. Because I have a disability, there have been a lot of supports that have helped me manage and maintain a lifestyle that allows me to hold a full time job successfully. Service coordination through my county and workplace accommodations are two of these things. I definitely could not be doing this on my own but empathize with those who are, I used to be in that position and life was much harder.

For years, I was also deeply involved with rabbit rescue. I became a licensed National Educator through the House Rabbit Society and began volunteering with them. Because of this, I currently share my home with two rabbits, four chinchillas, and a rat. As my illness has progressed, it’s been difficult to still volunteer my time but I do help out with our global Facebook group as an admin.

As for my mental health, I have struggled with mental illness in some capacity for most of my life. Earlier childhood trauma left me combatting symptoms of CPTSD for as long as I can possibly remember.

I first began treatment in a clinical setting when I was 24. My boyfriend at the time decided that I needed to see someone to help work through the trauma of my past.

Like most, I didn’t mesh well with my first psychologist and though there were no issues with our relationship, I don’t think we ever really got much into the history and healing with my past. I eventually quit, but started up again a few years later, with a therapist who had a psychiatrist in the same clinic. I was diagnosed with OCD and placed on meds, which felt like they helped, but we had to keep increasing the doses until I was on the max dose. The diagnosis of OCD kind of made sense, but it also kind of didn’t in my mind. After about a year of on-off treatment, the clinic randomly closed and I found myself without a therapist or a psychiatrist again.

Depression, bouts of dissociated manic-like behavior, and extreme sensitivity led me to seek more help a year later.

This is when I met my current psychiatrist and therapist.

Our story is one of my favorites. He had a blog online and the day I found it, I spent hours reading it. At the time, I was a small pet (rabbit) blogger and really appreciated the art of blogging more than most. I immediately felt he would be the best doctor for me.

I sent a request online to schedule a consultation. He promptly responded that OCD was not one of his specialty’s and gave me the name of a few other psychiatrists to check out. I responded back, stating that I needed help with general anxiety currently, asked again for a consultation, and said I would go away if after the consultation he decided we would not be a good fit together.

At the consultation, he agreed to treat me. And that’s how I became his first patient.

I am lucky, I have a psychiatrist who does his own therapy, so I have 1 person who helps me manage my mental illness rather than multiple doctors or therapists I need to keep track of and organized with.

A part of my “team” though is also my Service Coordinator who comes once a week to help me with whatever I need, everything from seeking out dental care with no insurance to helping me find places to apply for service dogs. She is also just great to use when I’m overwhelmed and just need another ear to listen to what is happening in my life currently. Thankfully, this service is free to me and is set up through my County.

After a few months with my new psychiatrist, I was diagnosed with Bipolar Disorder. We eventually realized that these manic episodes were severe dissociated states that I would get lost in when triggered. With that, my diagnosis has changed a bit and so has my treatment. Bipolar Disorder is no longer a diagnosis of mine.

In May of 2022, I was officially diagnosed with Schizotypal Personality Disorder. At first, looking at the criteria, I felt isolated and misunderstood. The criteria did not show the person I was or the person people knew me as. It felt wrong.

As my doctor and I discussed the diagnosis, and the many different aspects of Schizotypal Personality Disorder, and what it looks like… I realized it fit me to a T.

In the United States, the DSM categorizes Schizotypal Personality Disorder as a personality disorder. But the World Health Organization and ICD-11 categorize Schizotypal Disorder as a schizophrenia spectrum disorder that is considered a less severe version of schizophrenia. Once I looked at it from this angle, and my doctor and I went over symptoms in the EASE (Examination of Anomalous Self-Experience), I knew this was the correct diagnosis for me. Schizophrenia spectrum is what he and I use most when discussing my disorder.

Along these same lines, it’s common for certain types of schizophrenia to be closely associated with symptoms of OCD. I fit perfectly into this cluster of individuals. OCD-like thoughts and behaviors are something I struggle with constantly. This tends to be an issue very closely experienced with schizophrenia, so my OCD diagnosis didn’t come back, but it’s something I struggle with daily.

Another piece of the puzzle is autistic-like traits. Those with Schizotypal Disorder commonly struggle with a lot of similar traits to those diagnosed with autism and there’s been a lot of overlap. Some of the traits I struggle most with are concrete thinking, strict adherence to rules and routines, and obsessive interests.

Along with Schizotypal Disorder, I have been diagnosed with CPTSD/PTSD with the dissociative subtype. As time has gone on, and therapy has gotten deeper into my past, my symptoms show signs of a dissociative disorder, with symptoms similar but not identical to DID (Dissociative Identity Disorder, also known as Multiple Personality Disorder), but not enough to fit the diagnosis. Most recently, my doctor and I have discussed Other Dissociative Disorder as a diagnosis of mine. This usually would cancel out CPTSD as Other Dissociative Disorder indicates a post-traumatic stress disorder.

Last but not least, I have a Provisional diagnosis of ADHD. The neuropsychologist who did my testing gave me a Provisional diagnosis based on me not having a family member or friend who could provide information from when I was younger, and could not rule out that some of my symptoms that appear as ADHD also correlate with symptoms of CPTSD. My psychiatrist and I tend to refer to my symptoms as cognitive deficits and less as ADHD due to cognitive deficits being present in schizophrenia and trauma related disorders as well. However, I do tend to include it in my diagnosis because it explains the reasoning behind medication choices.

My journey with mental health treatment has been a long and interesting one. Over the years it’s been necessary to do a lot of bouncing around treatment-wise. Some months, most months for the first five years, were spent finding solutions and a treatment plan that would allow me to remain stable for periods longer than a week. The first five years were a whirlwind of instability and uncertainty, with my symptoms and experiences changing often.

I think stability in chronic mental illness means something different to stability to the normal person though. In an effort to be transparent, this is what stability looks like for me. Stability for me can look like days of instability but with a foundation strong enough to support those days until I’m feeling better. Instability is when my foundation begins to become unstable and the supports I have in place to help when I’m not feeling my best begin to no longer be enough to maintain healthy daily living. Instability are the times when my job or home life is at risk of collapsing.

Thankfully, with the help of the right medication and therapy, I feel I’ve been pretty stable for 5-6 months now. I definitely still have my days, but the supports I have in place now are more reliable and consistent.

After five and a half years with my current psychiatrist, I feel lucky to say I found someone that I trust, admire, and respect. This feels like an important aspect in my life that has given me space to find stability finally.

Like many others, it’s easy to see that my diagnosis and treatments have expanded and changed over time. The field of psychiatry is an interesting field but also one that has little reliable guidance in diagnosing illnesses, especially those with symptoms that fall outside the diagnostic criteria of the DSM-5 or DSM-5-TR. According to the DSM, I should be diagnosed with a myriad of illnesses, but truly a lot of overlapping symptoms for other illnesses still fit under one or two diagnosis and this should be considered before adding on additional diagnosis to someone’s chart. These names tend to stick with us for a lifetime and it’s important that is recognized during the process of diagnosing.

This is my truth about my history with mental illness.

With this blog, I hope to help others feel less alone but also give guidance on the harder parts of living with a mental illness. I hope to share my experiences as I experience them, but with a main focus on educating and improving the lives of others around me.

With mental illness, I think we all experience an initial hardship with accepting our diagnosis and beginning to see life in a positive light again. Illness is just hard. It’s hard and it’s not pretty.

But mental illness does not need to be all dark, doom, and gloom. Although living with a mental illness is tough and sometimes the darkness is inevitable, we still ALL deserve a life of enjoyment, positivity, and light.

We all still deserve happiness.

Part of that is finding and having knowledge and information about mental illness that can allow us to live our lives easier and better, despite the setbacks. Knowledge and information is truly a power we can all hold and use to our benefit.

I truly hope I can help be a reminder of the light when it’s not there for others and I hope I can help provide insight and give you the tools on how to find the light for yourself when you think it’s lost.

Be well. Be happy. Be healthy.