Mental Illness Research is Failing Us

posted in: chronic illness | 2

I blog for World Mental Health DayWorld Mental Health Day is just passed, and with it, the calls for heightened awareness of the issues concerned with, ironically, mental illness. While it is gratifying to me as a long-term sufferer to see awareness raising all the time, and advocates stepping out (particularly in groups often reluctant to speak out, such as men due to ‘traditional’ gender roles), I can’t help but feel a large piece of the puzzle is missing.

People who suffer from depression and other mental illnesses and their close supporters speak freely about the tough stuff these days, but it feels to me like the larger community, particularly the research community, is not coming to the party. It is perhaps not their fault – I can’t imagine research dollars for depression, bipolar, schizophrenia, anxiety, OCD and more, attract much in the way of funding even though a veritable epidemic is raging across the world.

In the activist and advocacy community, people talk about stigma and busting stigma, and yet I can’t help but feel we are running far behind other health issues such as cancer. Don’t get me wrong, cancer is terrible, and even with multi-million dollar funding campaigns, there’s a lot of skimming going on – such as the ‘think pink’ corporate campaigns riding the spectre of breast cancer that have little to do with research and more to do with profit. I believe I’m allowed to have an opinion on cancer as I have lobular carcinoma in-situ – which is associated with increasing risk of developing an invasive breast cancer. I suspect it has a significant risk attached to it as the oncologist I visited urged me to consider a double mastectomy – an order I’m loathe to obey given the kind of catastrophic medicine I’ve experienced.

Dark Forest © 2012 Jane Waterman
Dark Forest © 2012 Jane Waterman

Back to mental health, or rather, mental illness. I’ve experienced this first-hand for many years, and today was a bad day. On each bad day, I learn more about myself – the need to keep control in the face of overwhelming stresses, the denial of those stresses, and then the snap and slip back on my hard-earned progress. And yet, there is still progress. Today, perhaps for the first time ever, I was able to share with my partner the mounting irritability caused by pressures in my life, and my increasing inability to control that irritability. Unfortunately for me, and for her, a loved one let us down on a commitment she made, and the extra stress caused the snap of months of building psychic pain. Alas, I turned to my old ‘friend’, self-harm. It was only then, that the months of tears could come forth, and I felt released from the numb awareness that my emotions were foreign to me, other than a sense of the simmering anger that exploded today in a way that is so unlike me.

Afterwards, while ‘fessing up to my sins (it turns out I had managed to schedule my breakdown an hour before seeing my weekly acupuncture appointment – punctuation was off the table today, however), it struck me that the overwhelming guilt and shame I felt made it hard for me to meet my naturopath’s or my wife’s gaze. What was my shame about? For sure, the few scratches under my sleeve – the visible sign that I messed up – but above all it was the loss of control, the overwhelming helplessness in the face of my illnesses.

Why is research so scarce for mental illness? In a recent chat between health advocates about the tough issue of death, it seemed the resoundingly common threat of death in not only mental but invisible physical illnesses (such as autoimmune disease) was by suicide due to the overwhelming depression in the face of unremitting pain.

I first became ill in 1988, and started seeking treatment in 1990 for major depression. I’ve been on various pharmaceutical, alternative, and talk/cognitive therapy treatments over the years. What strikes me now is that the treatment hasn’t changed much since 1990. Worse though, our understanding hasn’t changed much either. When you talk about depression and other illnesses, people have so many opinions about why they occur: genetics, environment, nurture, tough luck, weak spirits, laziness – but what disturbs me is how little this talk is backed up by facts. Most of the studies going on seem to be driven by big pharma – who, let’s face it, have investment only in one part of the equation – treatment after the fact with anti-depressants.

I’m not knocking anti-depressants. I’ve been on many over the last 20 years, and have been helped by many, as well as damaged. Why damaged? In my early days, I was placed on many regimes of inappropriate medications, that were often ramped up to the highest dose before being abandoned for the next best thing. I believe I still experience the physical and mental fall-out of those early side-effects and traumas to this day. I feel in part responsible, as I collaborated by believing that medicine alone could cure me, and that it was just a matter of following the prescribed treatment.

The crucial problem, however, is that the patient’s ability to participate in the process is severely compromised as the disease attacks the very organ involved in making reasoned decisions: the brain. If I had my journey all over again, I would have skipped a lot of those years of guinea-pig drug trials and moved straight to cognitive therapy and mindfulness-based techniques. In my experience of depression and other illnesses, I believe that the sooner we achieve a measure of recovery (and accompanying hope), the sooner we avoid a chronic, perhaps life-long problem.

Today reminded me that because of the lack of early intervention and support, and my blind faith in the pharmaceutical model, I am now struggling to get out from under the weight of an illness that seems to be all consuming. Indeed, the energy I spend trying to subdue and control the illness consumes me as much as the ensuing breakdown every few months or so: the actual succumbing to the symptoms.

I’m still left with the questions as to why? Why does this all begin? Do we understand why the ill mind does what it does? Where is the seat of mental illness? What factors are known to be culpable in disease? What can we do to head illnesses off in childhood before they emerge fully formed as disorders in adulthood? Why is there so little we know?

The research all seems to be based on the effects and side-effects of the treatment. Why is there no ‘search for the cure’? Why is there no effort to shut down these illnesses before they can begin?

I think the millions of people out there who so bravely advocate for people with mental illness, whenever they speak publicly about their battles, deserve the same respect and answers that any other person suffering from an often intractable and sometimes fatal illness does.



2 Responses

  1. Carmen Waterman aka
    | Reply

    I agree that those that speak up, those that seek help and all of the people affected by mental illness need to get more recognition and support. The current system certainly isn't doing enough and I don't know what the right answers are.

    I do know that I am proud of you, and above everything else hope you can be kind and gentle with yourself. So many people have no concept of the true battle and agonizing internal pain that so many suffer with. I pray for more awareness, for loving compassion and understanding and for healing.

    Holding on with you for always


    • Jane
      | Reply

      Thank you for commenting, Sweetie. Yes, those are definitely things I am also hoping, praying and dreaming of. It's perhaps a cliche, but I feel like each of us speaking our truth, no matter how or how much, makes a difference. I hope in some small way we can show people how great the struggles are, and that they in turn can show more compassion, both to others and themselves. Lots of love always. xxxx

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