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Getting the correct diagnosis and living with the stigma around mental illness, isn’t easy…

Nancy Rempel

My lived experience with depression and Bi-Polar II depression By Nancy Rempel

I have struggled with depression for most of my adult life. Being given a “label” from the tender age of 14 is not an easy burden to bear in a society with such a strong stigma around mental illness. I still cringe when I have to fill out forms at the dentist, doctors’ and even physiotherapist’s office asking the question: “Emotional Problems” or “Psychological Problems” or more recently “Mental Illness.” Marking those boxes is a reminder of my 30-year struggle, and feels like I am driving another nail into my own mental health “cross” of sorts, when it comes to my presentation to the outside world. I realize many people might find this dramatic and the analogy tantamount to sacrilege, but I suspect it is true for many who live with mental illness. The reality is that stigma exists and is perpetuated through a lack of education and understanding about what struggling with mental illness really looks and feels like. Often, after filling out the forms and checking off my red flag, I wait, anxious to present as a “normal” person. Did the receptionist look at me funny or change her tone with me, or was I imagining that? Did the physician brush off my concerns because I have checked off the crazy box? In the past, I have often chosen to ignore that check box. Perhaps my eye skipped over that question and it isn’t always a yes/no. Who wants a virtual stranger, like the secretary at the front desk or the person cleaning your teeth thinking that you are unstable? I do enough questioning of myself and feeding of my own self-criticism/brow-beating mill – I don’t need strangers adding to it as well. Even though I have lived with Bipolar II disorder for a good 30 years, I only received an accurate diagnosis of my illness two years ago. Prior to that, I have always been labelled and self-labelled as struggling with major depression and anxiety. One has to question how it could take 20 years to get a correct diagnosis – despite being treated by the same psychiatrist for all those years. I think part of the difficulty is that I work hard to present and believe in what I consider my “best” self. When I am struggling, my first reflex is to convince myself and those around me that I am well, so my repertoire includes doing cliché things like putting on a smile, in the hope that my mood will also start feeling sunny. Being a good actor also spares the people you love from the discomfort of knowing you are in pain. I sometimes wonder what the world would look like if people really let their real feelings “hang” out. My bet is that we would be overwhelmed by what we see. Once, I slipped off the edge of the path and down a steep cliff in our ravine. I hung on, cursing myself as the crumbling dirt kept slipping away under my sandaled feet. After taking time to pause and collect myself, I was able to slowly regain enough strength to swing one leg up and wiggle my body back up onto the ledge. That is how I picture myself while struggling to prevent the spiral down into depression: Hanging on and fighting tooth and nail to not slip down the disintegrating cliff leading into that terrible abyss. This shadow of self-doubt and fear of the return of “the beast” is a strange feeling to live with. When I am well, it can be held at bay. But, when I am struggling, I have a hard time distracting and controlling my racing mind, so it will test me with dark thoughts about what am I capable of. When I hear the gruesome news story about a schizophrenic man decapitating a stranger on the bus or a devoted mother drowning her children, I ask myself if I am capable of such horror? I describe it to my psychologist as “poking” myself. It hurts and feels very isolating – in the polite sane world, nobody ever talks about such things. She always reminds me that thoughts are just thoughts and that I need to be kind to myself by not judging or engaging – just let them be pass like the millions of others that flash through our heads. This is called distress tolerance and is a lot harder than it sounds. She also reminds me that the majority of horrible crimes are committed by supposedly sane people – yet, so much of the sensational media coverage focuses on those who are labelled mentally ill. I was thinking about my presentation to the world, when I recently brought her some canning. Being able to do things like manage the overwhelming harvest of fruit that comes my way each autumn is a sign that I am stable and doing well. Canning fruit may sound like a simple, manageable task, but up till last year, for four years in a row, I descended into major depression as the sun disappeared each fall. These depressions were unlike any I have experienced before because they lasted for six to seven months. And, the fact that they were unrelenting – with only a few months of relief before the next round – made my life feel like a never-ending date with living death. So, to be able to get canning done, during my most vulnerable time of year, is a huge sign of wellness. But, part of the process included going through a patch of darkness and poking myself with thoughts after deciding to share the bounty with her. Will my psychologist actually eat them? What if I am really capable of evil and could I put something in that could make her ill or die? Could I be like the witch in Snow White tempting her with poison apples? And why would I have such terrible thoughts about someone I see as a saviour in my life? Her encouragement and compassion has helped me stay afloat and away from the sharks of depression for two years. How could I ever even imagine that I could harm her? That is what mental illness is like for me. When I am really well, my mind is generally peaceful – intrusive thoughts, non-stop anxiety, and replaying my worst fears and nightmares become background noise that I can ignore or forget about. But, when the sun starts disappearing and darkness returns, I can’t help but be reminded and terrified about becoming ill. The beast starts lurking, and all these things regain their power. This leads to more anxiety and stirs up more of the same. As my psychologist has assured me, all of us experience a range of unpleasant thoughts and fears, but anxiety and depression creates a spiral that drains our resilience and can, without help, take us to a living hell that is very difficult to get out of. Losing control of your mind and thoughts is our greatest fear and a prospect that people living with mental illness meet face-to-face, and often repeatedly. The only place I have seen true humility and honesty on this subject is in the psych ward and at support groups, where people from every walk of life, bare their souls in the hopes of creating a sort of “exorcism” by exposing the darkest corners of our minds to the light of day. I try to combat these thoughts by turning them on their heads. I remind myself of favourite quotes by people who also suffer, like Leonard Cohen’s about “cracks” being where the light gets in. For me, this crack becomes clearest when the suffering ends. It is an almost indescribable feeling of rebirth and being alive and present to all the beauty and brilliance the world has to offer. It fuels my passion to share, and in some way make “normal” the dark world in which I sometimes dwell, and to help others understand that no one would ever make a choice to go there. I also find comfort in the words of my first psychiatrist, a wise, English gentleman, who was deeply compassionate and always took the time to help me work through my overwhelming feelings at such a tender age. The gist of what he said is that if you have the capacity to worry about going crazy – you aren’t – because someone who has lost touch with reality is no longer self-aware and would never begin to question their thoughts. I also work hard to make my mental health a priority. I take time to be kind to myself and tune-in to how I am feeling and what I need to do in order to manage the stresses and pressures that come my way. Finally, I remind myself that living with mental illness isn’t a choice and nothing new. And, in my experience, the sun always comes back again.

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