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Sharing, Silence & Stigma - How I really am today

I can’t quantify the number of times I have thought about sharing what I am about to write. Sometimes I have zero filter for what I feel is expected of us, of me, at this stage in my life. Today is one of those days and I will endeavour to make sense of it the best way I know how; writing to you.

It seems that in our society whilst we are getting more comfortable talking about mental health, we are still reluctant to enquire about and accept others’ experiences of mental illness. Perhaps you, reading this, also struggle with symptoms of a mental health condition, as they are referred to. Perhaps someone you know is. Usually one or the other is true especially as the number of diagnostic criteria seems to expand everyday, it seems we all could be ill, a very dystopian viewpoint indeed.

"It is no measure of health to be well adjusted to a profoundly sick society." ~Jiddu Krishnamurt

Diagnosed or not, a larger and larger proportion of people are managing symptoms of mental illness, like anxiety or depression and of that many are receiving treatment. Of course, many others are not managing them effectively depending on how you measure and consider the statistics for self-medication, dependence on harmful behaviours and addictions.

So why when more and more of us are taking the plunge, reaching out to loved ones, our GP or Mental Health services, fundraising for MH charities, are we still nervous about talking about mental illness as others actually experience it? Are we or this something else that is ‘all in my mind’?

Perhaps this is only apparent to those who are directly affected by the shame that silence and quite often complacency bring. It leads to silence and suffering in my experience.

After many years in the mental health ‘system’ and now in my forties, I have been I believe correctly diagnosed with the charming umbrella diagnosis of Emotionally Unstable Personality Disorder (previously and still often unhelpfully known as ‘Borderline’). This is the first time I have put this in writing as I too am a product of this society which tends to immediately label perceived vulnerability (and openness about it) as signs of weakness of character, poor willpower, selfishness etc.

This diagnosis when it came was no surprise, but it only came after a good deal of painful self-examination, making myself vulnerable to assessment after assessment and coming through the other side of a couple of. The NHS did not want to label me at first, because in the words of my GP I had ‘achieved so much’. The fact that I am married, have a child, a university degree, have so far avoided hospital and live in a nice postcode I believe counted against me and made me less likely to fit the expected profile.

The stigma of many severe and enduring mental health disorders exists in our struggling medical profession too, where it can do so much harm unfortunately leading many to dead ends, inappropriate pun intended. Remember we are ok to discuss difficult things.

Now I have the right diagnosis, identifying and thankfully accessing therapy (Dialectical Behavioural Therapy) is saving my life, literally. When I say that, people think I am joking or else get really uncomfortable around me I find. But you are at a distance as you read this so I feel I can tell you that yes, I have been having suicidal thoughts and often struggled to function going through cycles of despair and numbness for years, particularly since the Covid-19 lockdowns during which I was convinced the world was ending.

My husband, as my carer, invisible in his toil is my rock and without him I would not be here. With the help of my therapist, my own therapy work and my family, I have now been able to reduce the frequency of suicidal thoughts and have learned vital skills to both tolerate distress and better regulate my emotions.

Like many others I have spoken with, those that know, know how hard it is to overcome this barrier, this self-stigma that we should not talk about emotionality gone haywire, about suicide. Just be strong enough to tolerate the intolerable and distract with work/play/food/drink/drugs/shopping. Rather that, than make another human being uncomfortable by telling them how badly we are actually feeling.

"The curious paradox is that when I accept myself just as I am, then I change." ~Carl Rogers

To think where I could have been should I have not revealed my lived experience to professionals or friends, gives me mixed feelings. Perhaps I could have continued to pretend, to act ‘as if’ I was normal and retained the job, the social life, the aspirations that I once had.

But I do not feel normal. No amount of you telling me I am, would convince me so, still today. Normal appears all around me. Normal is difficult, challenging, full of ups and downs, triumphs, tragedies and the rhythm of daily life. But perhaps I mean typical, not normal. Typical in my social bubble (when I had once) is 2+ kids, a job or career, dealing with financial pressures/a mortgage and from appearances, various iterations of a social life. From my perspective, I have trouble with the fact that I have had the promise of and lost all of these things which seem the hallmark of achievement and success.

Somehow, bit by bit they have been placed out of reach, due to the need to manage my illness and put my mental health first so I can be present for my family as is. It is hard, everyday, as I am reminded on the school run or conversations with others about their large families, their responsibilities, their busyness, the joys and worries these bring. My husband is doing very well at his job, hearing the muffled hum of him on a call with colleagues reminds me of the career I did not forge, the jobs I walked away from over without making a sound (well perhaps a silent scream or two). My son’s bemusement when his sibling friends bicker and joke with each other. What could have been, if it weren’t for me and how I react to the challenges of, well, being me.

Overall, when I try to imagine where I could have been should I have continued with waiting to feel ‘better’ on my cocktail of antidepressents and periodic binges on alcohol, I guess I must feel that I have taken a better path. I know that when I made the decision to become sober, it was a lifelong commitment not a lifestyle choice, once that was preserving what I truly valued in my life; my family and my own capacity to build a life.

I had no idea that I would begin a process of re-evaluation one that would lead me to where I am today. Struggling to find meaning, as my family too have busy lives and I am left trying to understand what I am here for and how to carry the weight of my experiences with the least burden on them.

I have found my lived experience does not fit the textbook trauma sometimes associated with severe mental illness and that this too is a source of shame. For me, re-experiencing painful moments has become it’s own problem (features of Complex PTSD), and with this I am faced with the fact that I can’t change the past, only how I feel about it. I need to teach my body and my mind to accept the past, as this is the only way I can change. It is supremely difficult, but is leading to better treatment and strategies for me to self-manage. I am gradually reducing how much the past intrudes on the present and hope to one day be able to once again do more than cope.

I'm still standing...

Right now, as I sit with this particular painful moment I stop to recall that I have survived all of the painful moments in my life so far. I remind myself that whatever spirals my thoughts travel down, whatever the individuals or situations they are attached to in this moment, the same could be concluded about other painful experiences during the past 30 years.

The unfortunate benefit of lived experience of managing my mental illness is that although I can’t change the beginning, I am repeatedly presented with the opportunity for better understanding and a chance to redraft my ending each time.

I have no idea if it has helped me to write this and publish it today. Perhaps I have yet burned more bridges, but I live in hope that one day it will be ok to be openly me, clear on only one thing - that I have is no expectations that you will fix, repair, comfort, divert…just be with me and listen.

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