I’m broken and angry. I’ve said it before and I’ll say it again: when it comes to mental health care, help can be hardest to find when you need it most.
I’m not shy about admitting that I struggle to maintain my mental health. Depression and borderline personality disorder create a storm within me. My emotional stability and sanity can waver day by day, sometimes even minute by minute. At times I feel like life is a gift – moments later I might feel complete hopelessness and despair.
When I try to explain this to others I tell them that in the moments of joy, peace and fulfillment it is as if I forget what the darkness really feels like. I remember that I felt pain, but I’m unfailingly convinced I’ve come to the other side of that pain and will be okay from this point forward.
The same is true about the darkness. Today I felt hopelessly alone and although I could remember that at times I experience joy, peace and belonging, I truly believed it would never return to me. My head might be saying “this feeling will pass, this feeling does pass” but something deeper than my conscious is screaming that it won’t. This is really hard on Kathryn, because she wants desperately to remind me that I don’t always feel this way but it’s as if I can’t believe her.
I’ve been on a long journey to find the right combination of medication, support and self-determination to claw my way back to a place of stability. I don’t really remember any length of time where this struggle did not force its way into my life on a far too regular basis. I’ve done dialectic behaviour therapy in the past, and while it had its ups and downs I must have been more stable than I currently am because I was working full-time, came out to my friends and family, built a relationship with and even got married to the woman I loved. For the first time in my life I felt like I was making somewhat steady progress forward.
But its not a therapy that is meant to last forever – many people complete treatment in about a year or so. Part of that may be because some people learn to cope with their emotions in a way that is sustainable and gives life, others may learn to just live through the darkness in ways that feel manageable. It’s also true that the resources simply do not exist to keep someone in therapy long-term and waitlists for this form of treatment, which is offered in very few places, are long. The goal of therapy is to learn to 1) manage one’s emotional vulnerability, and 2) cope with emotional crisis when it does arise without making the situation worse or doing things one will later regret. It feels like the prevailing attitude is that if DBT hasn’t accomplished these goals within a year or two, it likely won’t with continued treatment.
In any case, in 2013 I was discharged for ‘completing’ DBT. My hope was high at the time, and I believed I had the skills necessary to maintain the growth I had accomplished. But within a few short months things started to fall apart, and if you’ve read previous posts on this blog, you know some of the struggle to find wellness I’ve faced since then.
Stigma and prejudices against those diagnosed with borderline personality disorder are great, even within the mental health community. In an article on Brain Blogger, Elise Stobbe writes, “There may be no other psychiatric diagnosis more laden with stereotypes and stigma than Borderline Personality Disorder. People who live with this label often have problems accessing good mental health services. Unlike the stigmatization that society puts on mental illness, the stigma associated with BPD often comes from mental health professionals and their patronizing attitudes.” (http://bit.ly/1EPzWNH)
Professionals in ERs, psych wards and crisis outreach organizations may see people with BPD as manipulative, compulsive liars, and resistant to treatment. Suicidal behaviour and self-harm are often interpreted as attempts to control another person’s behaviour or get a desired outcome. Resistance to medication or therapy is termed ‘wilfulness’ and a person who is suffering might be dismissed as unwilling to engage in therapy rather than simply terrified and fraught with uncertainty about how to move forward in the face of such overwhelming fear. Kathryn and I have met healthcare professionals who openly admit to not believing that BPD is a valid diagnosis, despite being listed in the DSM since 1980. I personally have been told by a crisis worker that I cannot be helped because I’ve attempted suicide so many times but never completed it and therefore cannot be taken seriously (I AM NOT MAKING THIS UP). The implication was that I ‘cry wolf’ and waste resources. The message I’m left with is that I would have to be dead before anyone would believe my life was at risk.
The hardest part in all of this is that a person struggling to find help has very few options. My choices are to seek hospitalization, where I spent most of last year being juggled from one medication to another (tried on more than 20 medications last year alone) and shifted from one psychiatrist to another. Because BPD can mask the symptoms of many other mental illnesses, I have been treated for bipolar, OCD, trichotillomania, and PTSD – none of which helped in any way or proved to be accurate diagnoses in the long run.
The next step from hospitalization is a short-term crisis support day program that lasts from 6-8 weeks and exists to help transition a patient from hospitalization to community supports. I have completed this program three times in the past. While the goal of getting stable enough to be at home is prioritized, long-term treatment of the symptoms that led to hospitalization in the first place is rarely focused on due to the limited length of the program.
The third option, what seems like the best option, is that my family doctor has recommended I be on medication and in weekly therapy in order to reduce my dependence on emergency resources like crisis phone lines and the hospital, and to increase my stability so I can return to work and focus on other aspects of life beyond just coping day-to-day. In regular therapy I can work toward specific long-term goals, address areas of interference and have my response to medication monitored. However, finding a skilled therapist who can provide long-term treatment is sadly not that simple.
After being referred multiple times to psychiatrists that were not taking patients (and essentially placed in an unending holding pattern), Kathryn and I decided to do the work ourselves of calling psychiatrist offices in our area to find someone taking new patients for ongoing therapy (not just short-term medication consult). Kathryn and I have called literally dozens of psychiatrists in our area and only found ONE that is taking patients. The rest won’t even put my name on a waitlist because the waitlists are already too long. It seems like this one psychiatrist is my only hope of receiving OHIP covered treatment (the only other option being private therapy which is absurdly expensive).
And I should be grateful. At least we found someone, right? But mental health is so personal, and treatment is such an intimate process, what happens if you don’t click with the one professional offering you treatment? What happens when their method and your needs are simply not a match? She has told me in a number of ways that she is not a ‘conventional’ psychiatrist, that others exist who can help me in more traditional ways (yet I fail to see how I am supposed to find access to these services). I’ve only met with her a handful of times, but I’m getting a real serious vibe that she doesn’t think BPD is really the problem – that the root of my struggle lies elsewhere. This is of great concern to me. Perhaps she too has significant prejudice against BPD. At times, I wonder if this is just in my head, if I’m simply unhappy because I’m comparing her to my previous therapist. But the more Kathryn and I talk about my sessions with her, the more our concern grows.
I don’t have enough experience yet to judge whether treatment with her will be effective, but I feel like I’m being asked to jump through flaming hoops just for the potential. Meanwhile my symptoms continue to overwhelm me on many days and I’m left wondering if I’ll ever be able to access effective treatment and move from a place of struggle to a place of wellness.