My guest on BSS today is Kristen, the author of the ground-breaking blog Pride In Madness. Kristen has a unique and liberating approach to what most of us are accustomed to refer to as “mental illness,” including myself of course. But Kristen has broken out of that mold, and has graciously agreed to share her very important views with us.
Breaking the Silence of Stigma: How long have you known that you are living with a mental illness?
Pride In Madness: I used to say I had a mental illness, back when I believed I was sick. Now, I believe that I am who I am and that person happens to be “different” from what society believes I should be. I do believe that I was born more emotional than most. My Mother reports that I didn’t let anyone but her and my Father hold me until I was a year old. I would continue to have attachment issues and be very shy. I was the child that would cry at the drop of a hat. It began causing problems in my mind when I was 11 years old, became more severe when I was 12 but I have known I was “different” for about 11 years. I have been identifying as a Mad person for the past 4 years (Mad being a reclaimed term by some in the mental health community who believe that what we know of as “mental illness” is a part of being human and something that can be horrible but is also something worthy of celebration).
BSS: Can you share with us your diagnosis/diagnoses?
PIM: My first “diagnosis” was hormones at 13 years old. Dysthymia (chronic depression) followed when I was 16, than Borderline Personality Disorder at 18 and finally I received Borderline Personality Traits when I was 23 years old (I am 24, currently). My current traits diagnosis is just “on paper” meaning the psychiatrist I saw respected and agreed with my desire to not be labeled but for the sake of the system he had to write down something. If I need to explain to others what I experience I say that I have difficulty processing and at times regulating my anger.
BSS: How were they diagnosed? Did you have any special testing?
PIM: The “testing” part is a sore spot for me. I have been diagnosed within 45 minutes and before the official diagnosis I knew exactly what diagnosis the psychiatrist was getting at because of the questions they would ask. The fact of the matter is that there is no scientific or accurate testing for mental illness. I keep hearing that brains scans are showing what “depressed” and “borderline” brains look like but I have never been offered one. I read in Anatomy of an Epidemic by Robert Whitaker that your serotonin levels can be measured using your spinal fluid but, again, no one has ever given me that test. I value anecdotal evidence, don’t get me wrong, but I know that I have sat in front of a psychiatrist, lied, and gotten off the hook or gotten what I wanted. If psychiatry wants me to take it seriously it needs to have better testing than what I choose to tell them about myself. I am a perfect example of how psychiatry’s “testing” is seriously flawed. When I was diagnosed with Dysthymia (chronic depression) the doctor said that I would always be depressed and need medication for the rest of my life. That is what chronic means after all. He was wrong. I have survived without medication and haven’t had symptoms of a mood disorder for the past 6 or so years.
BSS: Were you diagnosed correctly the first time, or did it take time before the right diagnosis was arrived at? Do you feel that you do indeed have the correct diagnosis now?
PIM: If I use mainstream mental health thought, I believe that depression and borderline are the wrong diagnoses. When I heard that non-suicidal self injury disorder was a contender for the DSM V I was actually happy (and I hate the DSM so that’s saying something) because I hoped that proper research and treatment would follow for those of us who specifically engaged in that behaviour. Everything bad started when I self harmed but because I was diagnosed with disorders that saw self harm as a symptom the behaviour was actually never addressed. I have been self harming for 11 years and trying to figure it out on my own how to cope with the behaviour that has actually turned into an addiction. But I am happy to say that I am doing well with it! I’m very proud of myself! I believe that without a diagnosis I am living how I want to be living. Accepting myself and clearing out the bad in my life has done wonders for me. I am in place that I never thought was possible and since leaving the mental health system (returning only when I want to and on my terms) I have greatly improved. If I have to pick though, Borderline would be closest to my lived experience and offer me behavioural and emotional treatment options that I would find more desirable. I am me!
BSS: Have you ever been hospitalized ?
PIM: I have never been hospitalized and I believe this was the best course of action for me. When I was 16 years old I attempted to end my life and the psychiatrist asked my Father and I if I wanted to spend a few days at the hospital. Both I and my Father said no. This is still in some ways an issue because that particular hospital had a history or not caring about me. This was the hospital that dismissed my self harm and now they were dismissing my attempt to end my life. Again, using current mainstream mental health, this is beyond careless and poor practice. Still, I believe being in a hospital would have greatly set me back. The environment does not support the person I want to be. Those who love me are currently under strict instructions to never have me hospitalized unless I do it myself. I have been told before that since I haven’t been hospitalized then I must not be that “sick” or not “that bad”. This is a rude, damaging and incorrect assumption. I chose a path and it was one that did not include a hospital.
BSS: What has your experience been with medications?
PIM: I was on psychiatric medication for 2 years, beginning when I was 16. It was while I was on these drugs that I experienced the suicidality and homicidality adverse effects. These of course were ignored and contributed to my “mental illness”. I know that these thoughts, feelings and actions related to suicide and homicide were caused by the drugs because I had no desire to die or hurt others before or after the drugs. I have been psychiatric drug free for 6 years and have improved with each passing year. I do have an antipsychotic for the times I get too “up” in my rage but I tend to use it to shut my brain off so I can get some sleep. The last time I took this drug was early July 2013 and before that it was February 2013. I only use this drug when I need to and for the most part I ride out what I am feeling due to the drugs history of not liking my body and my desire to be in control of my body.
BSS: What other things do you do to feel as well as possible?
PIM: Activism is the single most important aspect of my wellbeing. I began engaging in activism in summer 2009 when I was entering my third year of university where I was studying social work. My activism has involved research, conference presentations, public speaking, peer support facilitation, blogging, Twitter, Facebook, articles, and anything I can get my hands on. It is through activism that I am able to engage in societal change and I have a voice now that I didn’t have when I was younger. It’s great to meet people who have been helped by a presentation I gave and it’s great for me to go home knowing that all the pain I went through is now doing something positive.
BSS: How have your symptoms impacted your life (jobs, education, relationships, children, alcohol, drug abuse…..
PIM: Regardless of how I want to view my experience it does impact my life but predominately my relationship with my partner. I love this man but past experiences with controlling partners have made me scared and I end up screaming and yelling at him because I feel with every inch of my body that he is trying to control me. I have a lot of difficulty controlling my anger but I do try my best and have learned distress tolerance, which is extremely helpful. I have more tools for coping now than I ever have and am more successful at using them. He knows that there is more to me than the rage that seeps out of me sometimes and most importantly I know there is more to me than the rage. I do also accept that it is there and the rage also creates the passion that drives me forward in my mental health advocacy work. All in all how I am impacts my life positively. I have come to accept my difficulties and can find the beauty in them.
BSS: Have you ever felt discriminated against, or had to deal with disparaging comments, denied a job or other opportunities?
PIM: I wish others knew how responsible they were for what I went through. I can of course take responsibility to an extent but there is only so much a young person can do when they’re called ugly and told no one will ever want to date them. Once those comments began to get to me and I turned to self harm, drinking, drugs and sex then I became a slut, druggie, “alcoholic”, crazy, freak, insane, psycho, sloppy seconds (in reference to having had sex before), and my personal “favourites”, suicidal cutter/suicidal slut. I was told then I should not go into social work because I’m not emotionally stable but I did and I’m great it! I am fearful about employment. Despite never losing a job because of any noticeable or perceived emotional issues it haunts me. I was told when I was younger than if an employer found out I was depressed that I would be fired. I go to work every day wondering if today will be the day that I “lose it”. I think this despite the overwhelming evidence that I am a top employee and extremely successful at my job (I work with children). Overall, it was just being made to feel like I was less than everyone else. I feel less shame about my extreme sadness, drug and alcohol abuse and suicidal attempt than I do about my self-harm. People still struggle with understanding that behaviour.
BSS: If you could give advice to someone else struggling with mental illness, what would it be?
PIM: If you want it then go get it!
Find comfort in discomfort!
Push yourself and you’ll be surprised how far you can go!
Take pride in yourself and your accomplishments!
Do what you need to do to ensure that you are in the place that you want to be in, a place that will make you happy!
Accept that things will get bad but that the good is worth it!
Write your own rules, do things for you!
BSS: Anything else you’d like to add?
PIM: I would not want anyone thinking that what I’ve experienced was solely based within me. The reason why I have become a better person is because I got rid of the emotionally abusive friendships and intimate relationships. What had me turn to self-harm in the first place was bullying. I was told by my male classmates that I was ugly and that no one would ever date me. Once I began self harming people then began calling me names and I was frequently abandoned by others because they couldn’t deal with how sad I was or they didn’t like that I was smoking, doing drugs, drinking and having sex. Boyfriends would control my every move. I was told who I could talk to, where I could go, what I could wear and 2 of them even interfered with my schooling by keeping me from studying and breaking up with me right before I went into an exam.
Once I established where I wanted to go and what I wanted out of life I began to clean up my life accordingly. DO NOT underestimate the power of outside forces in creating your misery. Most importantly do not underestimate yourself in being able to overcome your horrible experiences! <3
BSS: Thank you so much! You’ve shared some really thought-provoking insights that will have me thinking over the status quo, and considering whether I should swallow what I’m told wholesale, or whether I should really take my well-being into my own hands, as you have, and reach for the stars!
Again, Kristen’s blog is Pride in Madness. Go and read it.