I am 63 years old. I have had bipolar since I was 21. I have experienced one prolonged manic episode, many profound depressive episodes, and one prolonged mixed affective state. I have previously written two articles on this platform; one about diagnostic overshadowing and the other about mixed affective states.
The Bipolar Mood Scale on the Bipolar UK website illustrates the range of symptoms that can be experienced by a person with bipolar. When I have been at my lowest points, I have been almost completely paralysed by depression and have felt constantly suicidal. At times when my mood has been high, I have found it almost impossible to sit still for any length of time and I have experienced constant racing thoughts.
It was during my manic episode when I was aged 25 that I first became acutely aware that society can potentially cause harm to marginalised groups of people. The values of the world often flow in the opposite direction to many spiritual values. Whilst in the grip of the mania, I wrote a short passage titled "A Message of Hope". I can only accurately remember the first line:
‘Thinking and knowing. Trusting what I know. The well are ill and the ill are well.’
All these years later, I still hold by this, but perhaps not in such stark terms.
In this article, I share some of my experiences of living with bipolar disorder. I look at the way in which I see the world, how I have managed to survive, and how, despite all the challenges, I am living a rich and meaningful life.
We live in a world which seems to value fame, wealth, and power, often above the more spiritual values of kindness, gentleness, and faithfulness. Accumulating wealth appears to be desirable. Acquiring possessions seems to be encouraged. Worldly recognition is highly rated. It can be very challenging to find your way in this world if you are vulnerable and "unwell". Vulnerability is generally not seen as a strength, although I think it should be. I have struggled greatly through my life; having had no career to speak of, low social status, and little money. I have a serious mental health condition, which does not seem compatible with living a successful and fulfilling life. Throughout a lot of my life, I have felt marginalised and alienated from those around me.
I have felt misunderstood.
When I ran into my first episode of severe depression at the age of 21, I quickly came into contact with psychiatrists. I was "ill" and I was hospitalised. The psychiatrists were very kind, caring, and respectful. They wanted me to be "well" and functioning. But the sickness was definitely located within me. I was expected to change so that I could better fit into the social world. I was given drugs and ECT (Electroconvulsive Therapy).
I know that I brought shame to my family. I also felt a huge burden of personal failure and shame, which I carried for many years. Nobody told me that we live in a world with upside-down values. I had not lived up to my family’s expectations of me nor to society’s expectations of me.
I didn’t fit in.
More positively, over the past 42 years, I have enjoyed some long periods of mood stability when I have managed to sustain work which has aligned with my values. I have worked in a legal aid law firm, as a mental health advocate and as a befriender in my local community. By walking alongside other people who are marginalised, I have found deep meaning in my life.
Perhaps I could be a person of value? Perhaps I am a person of value?
I see a psychiatrist from time to time when I am struggling with my mood. I have found that some mental health professionals have been empowering and validating of me, whilst others have not. When meeting with a psychiatrist, the power imbalance meets me head-on. I feel as though I am the problematic person in the room. Rightly or wrongly, I immediately feel judged. It has been my experience that the psychiatrist makes a diagnosis or formulation, which has at times been imposed on me without consultation, and has on some occasions been wrong. They might prescribe drugs for my mental health condition without having given me much information about the drug. My own personal life story, or narrative, has at times been trampled all over by psychiatrists. My true voice has often struggled to be heard. Mental health professionals hold the medical records and make most of the entries to these records.
How much room is there for a person’s voice to be heard? How much space is there for a person’s own narrative?
So, if we live in a world with upside-down values, how do we raise up the marginalised? How do we properly listen to stories of oppression in families and other social systems? How can we flip the psychiatrist-patient power balance so that it is the person seeking assistance who calls the shots and makes their own informed decisions? The huge power imbalance is so engrained in the essence of psychiatry and society that it has become almost invisible. It represents the status quo.
The task of raising up people marginalised by way of mental health conditions is a challenge for psychiatry, psychology, and theology to address.
I am a member of a large bipolar peer support group. We keep connected through WhatsApp groups and weekly Zoom meetings. The support which we all give each other is so precious. We are equal members facing similar challenges. A constant undercurrent to the group is the knowledge that any one of us may slip into mania or depression at any time. We help each other to recognise early warning signs of any mood slippage and encourage one another to seek appropriate help quickly if this happens.
We listen to each other. We believe each other. We see each other as valuable human beings.
We hold onto the positives of others, especially when they are unable to see those positives themselves.
I am very fortunate to have a GP who listens to me. Occasionally I see a forward-thinking Consultant Psychiatrist who is empowering and validating of me. My current situation has been hard-won after some shockingly poor psychiatric treatment which left me feeling emotionally traumatised and completely defeated. I was utterly powerless in the face of an immovable psychiatric system. Nobody was listening to me.
The effect of the poor treatment has been to focus my mind so that I now have a very clear idea of what good care and treatment look like, at least for myself.
I do believe in psychiatry as a valid medical discipline. Throughout my life, I have been helped enormously both by medication and psychotherapy. These two approaches need not be mutually exclusive, but rather they can work together very beneficially. However, I believe that psychiatry needs to undergo a paradigm shift in attitudes and practice to make it fit for purpose. It seems to me that a lot of small changes could add up to something much bigger. Some of the better mental health trusts are bringing in changes, but we need to go further in terms of equalising power relations between mental health professionals and people with mental health conditions.
We all need to be valued, validated, empowered, and properly listened to. We need to be given the space to be heard.
True collaborative working has to be the way forward. I would suggest that people need to be accepted and valued just as they are. We are all made up of a complex combination of strengths, abilities, challenges and vulnerabilities. It has been through being fully accepted at a deep level that I have found a path to healing.