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You Are Not Your Illness

by Misophonia International (Admin)

It’s always nice to have a name for what you are suffering from. It is true that people will seek to know what it is that is taking over their life. “What is my diagnosis?” However, the true challenge is ultimately to find the name… and then let it go.

I was diagnosed with Borderline Personality Disorder (BPD) at 15 years old. I held onto that diagnosis for 5 years. It fit me perfectly. If people asked what I suffer from with BPD I would list off the all the symptoms and challenges from NIMH:

Frantic efforts to avoid real or imagined abandonment
A pattern of intense and unstable relationships with family, friends, and loved ones, often swinging from extreme closeness and love (idealization) to extreme dislike or anger (devaluation)
Distorted and unstable self-image or sense of self
Impulsive and often dangerous behaviors, such as spending sprees, unsafe sex, substance abuse, reckless driving, and binge eating
Recurring suicidal behaviors or threats or self-harming behavior, such as cutting
Intense and highly changeable moods, with each episode lasting from a few hours to a few days
Chronic feelings of emptiness
Inappropriate, intense anger or problems controlling anger
Having stress-related paranoid thoughts
Having severe dissociative symptoms, such as feeling cut off from oneself, observing oneself from outside the body, or losing touch with reality

It was easy to tell people about these symptoms because personally, I suffered from all of them… plus more. However, this disorder began to define me. It told me what to do in the morning, day, and night. It told me who I was and how I should feel. I became my illness. I got comfortable in that space. I would tell myself that I’m suffering… but it will end. I can end it anytime I want. I was right about that point. I could end it at any point I wanted but not in the way you would think. I’ve attempted suicide twice and, it was extreme. Both of these instances I was saved by police or a civilian. On both of the those attempts I knew once I stepped onto the train tracks or when I got on top of that building – I didn’t want to die – I wanted the pain to end. I knew I could end it myself. I didn’t want to be healthy. I didn’t “deserve” it. I didn’t want it. I was the sick person in the family, at school, and at work. I got special treatment, I got attention. I liked getting those things, but most of all, I liked being sick. It was my identity and I didn’t know who I was without the title of Borderline Personality Disorder. If I wasn’t institutionalized what was I going to do with my life? With my days? It was boring, and everyone who knows someone with Borderline Personality Disorder knows that when we suffer it is certainly not boring! I was living life on the edge when really all I wanted was to step back and find out who I am.

I grew older and went through addictions and drug rehab and detox programs, eating disorders, self-harm, suicide, abuse, financial problems, and more. I knew it was time. I moved out of my parents house and into my own apartment in downtown Toronto. I started my own little organization, a non-profit for LGBTQ mental health and it has begun to grow into something incredible. I started attending Ryerson University. I was out of all abusive relationships. I had friends, family, and a girlfriend by my side. In those 3 months, I found out who I am truly as a person. I found out that I am Zee. I love running my organization. I take the time to take homeless people to Tim Hortons, buy gatorade, feed the homeless dogs biscuits, and even give the sweater off my back.

I know this all sounds like a quick turnaround and truly – it was quick. As if I blinked and my whole life changed. You see, I was hospitalized at a private institution. In this institution you never got stripped checked, you got to wear your own clothes, have electronics, there was even a shopping centre in the middle of the facility, and restraints were only used if you were put into a different unit. I wasn’t used to this. I was used to having no privacy. I was used to having cameras everywhere, getting patted down, and I was not allowed anything but one brown crayon with a sheet of paper. When I went into this private institution, I figured something out about myself. I grew up in an upper-class home. My parents made lots of money and had great motor trade insurance, but I didn’t grow up an upper privileged kid. In my adolescence I was surrounded by escorts, drug dealers, abuse, fear, gangs, sick people, confused people, and having to stand my ground no matter who wanted to knock me down. I’m not saying anything is wrong with any of those types of people – some of them were the sweetest people I have ever met. But I learned if you kick me when I’m down, I’ll break your leg. I grew up defensive. I grew up not knowing who would be sleeping in the hospital bed next to me. Sometimes, not even knowing if I was safe. However, in this last institution, everyone was “normal” they were suffering… but they were upper class and their suffering looked a lot different than what I was used to. For therapy in the hospital, I would look out my window, or sleep. For therapy at this private institution I would sit in massage chairs, work out, go swimming, tennis, learning to play the ukulele, meeting people who have been through a lot at a different level. I didn’t stay long. I left after 10 days.

Those 10 days changed my life. I got to see the difference in care between the well-insured and the non-insured.The difference is incredible. That’s when I found my purpose. I opened Revolving of Doors (ROD) because of two people who were revolving door patients just like me. We used to joke around and say “see you next month” when one of us got discharged – but it wasn’t a joke, it was true – we always did see each other at least a month later. I dedicated my life to bettering the mental health system. If you go back to one of my dangerous suicide attempts, I was saved by a police officer. How? He asked me what I wanted in life – I was 16 and I said I wanted to be a mental health advocate. At 20 years old, after going through 33 hospitalizations, 1 group home, 1 crisis house, 3 institutions, and 3 consecutive years in a hospital bed – I learned who I was in 10 days. I learned that I may come from a wealthy home, a well-educated home, and that helped me in life. However, it does not define me. I am an advocate. I go to peer support groups, shop at thrift shops, and live off potatoes and diet coke. However, I am well educated, I have a university education, I was a scholar in high school, I have won multiple awards such as Scotiabank Game Changers, Accessibility Award, EA2014, Special Achievement Award, and more. I’m grounded, I know what it’s like to be scared every time I close my eyes and I also know what it’s like to walk on stage and tell my story – fearless.

I said earlier “I can end it anytime I want. I was right about that point. I could end it at any point I wanted but not in the way you would think” my point is when I was in a dark place I could have ended my life but I grew stronger everyday and I ended my major suffering. I ended it by coping. I no longer went to the hospital to avoid coping. I only went when I absolutely needed it. I spend an hour everyday on “vacation” from electronics, I read, write, colour, knit, anything. I just want to be with me and that’s enough. I cope on a regular basis, not just when I am in crisis. Growing up with Borderline Personality Disorder gave me the chance to blame everyone, especially myself. But, I no longer hate myself. I know people love me and I love them. I know that I have a purpose. I know that even if nothing is happening in my life and it’s “boring”, I can enjoy my own company.

What helped me survive was coping by myself on a regular basis. I used to hate the word “coping” and now I use it regularly. I’m not saying you have to see the world to understand and find yourself. I’m saying you need to take that time for you and only you. Get to know what you like, hobbies…anything. With Borderline Personality Disorder, when I had nothing to do I would go to something unhealthy – I have changed that to healthy and I’ve never been as content. Don’t get me wrong… I still suffer. I’m anxious everytime I leave the house, sometimes I just stay in bed all day because my migraines are incredible and I’m heavily medicated. I have help at school to get through it without exploding from stress… but, not all my days are bad now. I have “ok” days, good days and sometimes even great days.

BPD is known as the “hopeless” diagnosis. Doctors to this day don’t know how to diagnose or treat the disorder properly. But to everyone with BPD, I want you to know you are special, you have a strong purpose, you feel everything so deeply and no one except you and other sufferers will understand that. However, please know that your journey isn’t to be as sick as you can but to find your purpose and live it to your full potential while still receiving help. We feel emotions so intensely and that means we are extremely passionate about everything in our life – imagine finding that one thing that you are passionate about. That is your purpose. It could be as small as smiling in the mirror at yourself everyday to being Prime Minister. That is the purpose. I know you are suffering, I know it’s hard, I know you think no one understands, I know you feel hopeless, I know some doctors give you attitude because of your title, but I know you can get through this. I know that you were blessed with a curse and that you can overcome anything. You are strong. Your are willing. You can do this if you try. I promise. Remember that you are not your illness. Use it.

Sincerely, Zee

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