Facing fears for the future

Louise Bretland-Treharne finds herself dealing with a condition which many healthcare professionals don’t even recognise. And she’s now also facing a future made frightening to her by Government welfare reforms

Schizoaffective disorder is the diagnosis given to someone who experiences both the symptoms of a mood disorder like depression, and symptoms of the type experienced with schizophrenia at the same time, or within days of each other.

Due to the symptoms often being similar to either schizophrenia or manic-depression, it is often seen as a controversial diagnosis. Some clinicians do not believe there are sufficient differences to justify giving a separate diagnosis.

In the early 1990s I was diagnosed with this disorder. I find living with this complex illness frustrating and distressing, even with the recognition that I manage my condition well.

Professionals say it is not the actual diagnosis that is important, but the effect of, and the way I manage my illness. On a superficial level, I find this concept helpful, but in reality it is not always applicable. Insurance companies, benefit forms et cetera require an accurate diagnosis – an actual label.

When I was a psychiatric student nurse from 1990-1992, I did not come across this condition. I know you cannot confirm a mental illness as easily as taking an x-ray for a physical condition. I was originally diagnosed with manic depression, and later schizoaffective disorder. Will I see a different consultant in the future and be given yet another different diagnosis? It is a scary, insecure position to be in.

Input from my community psychiatric nurse and psychotherapist is definitely helpful – even essential. I still suffer episodes of psychosis, mood fluctuations, sleep deprivation, eating issues, memory/concentration problems, difficulty in assimilating new information, conflict/ confusion, suicidal thoughts and resultant loss of self-confidence and esteem. Some professionals do not recognise or understand the day-to-day challenges I face.

The Government is now putting all disabled people under pressure, especially with interviews to evaluate and validate claims and health status of benefit recipients.

I sometimes feel suicidal because of the stress of my illness, but I have not actually tried to kill myself since 2001. Being called for interviews, or treated like a benefit thief could be too much. Surely professionals regularly assessing and therapeutically supporting me, and significant others, can be allowed to represent me and put my case forward to benefit assessors. I dread being thought of as a benefit-scrounging fraud.

But I am determined to utilise all opportunities, using my own life experience, Buddhist practice, and input from professionals. I aim to continue managing my mental health issues. Valuing all my strengths and qualities, I feel is essential, even if at times a tall order. My weaker areas I try to respect and nurture. I would like to one day be in a position to inspire and motivate others to find the courage to heal.