Stevie’s story: Resisting misdiagnosis

“My experience of mental health services as a mixed-race* woman has been to resist a one-size-fits-all approach. I have spent a lot of time fighting my way out of boxes that I didn’t fit into and challenging misdiagnoses.”

That’s Stevie’s somewhat damning verdict on her mental health journey since her twenties. Having grown up in South London with an English mum and a Ghanaian dad, Stevie had a strict Catholic upbringing and went to a convent school. She struggled to accept her true sexual identity as a gay woman (which she knew from an early age) and literally prayed her way through the shame and guilt she felt.

“For many years, I continued to live in total denial of my sexual identity, which in turn adversely impacted my mental health,” says Stevie.

After going to University at 18 and completing a degree in psychosocial studies, Stevie’s mental health took a turn for the worse and she felt very depressed and anxious. She had always struggled being around people, had problems communicating with others, problems with how she learned and a stark dislike of change and a preference for predictability.

She had also experienced sexual abuse by a woman in her childhood and says that she thought that was “why I was queer”.

A combination of all these factors peaked in her early twenties resulting in Stevie having a breakdown. “I completely withdrew. I couldn’t speak and was mute for a whole year,” she says.

Stevie's support journey

She was living in Crystal Palace at the time on the border between Bromley and Croydon and finally decided to go and see her GP, convinced that she was depressed (in her words “an umbrella term”) as a result of her childhood trauma. The GP referred Stevie to counselling – “a good experience” – and the counsellor then referred Stevie for clinical intervention with a psychiatrist.

“My experience with the psychiatrist wasn’t so positive,” says Stevie. “I didn’t feel like he was there to listen and understand, but rather to give me a diagnosis and medicate me. He tried to diagnose me with schizophrenia and personality disorder. I got quite angry, as I knew alot of black people get labelled as schizophrenic and I knew that label was wrong in my case. I resisted the diagnosis as I didn’t want to take anti-psychotics.”

Psychotherapy and towards an autism diagnosis

Stevie had processing issues and was very sensitive to sound. Psychiatrists at Maudsley Hospital suggested that she had biopolar disorder, again a diagnosis which she resisted. Eventually she was put into psychotherapy and had sessions twice a week, which helped alot.

“Psychotherapy made me realise that the problems I was facing weren’t my fault. I realised that it wasn’t my personality defect (I had always felt something was ‘wrong’ with me) that was causing them and that, with my history of childhood trauma, it was important for me to work through my pain. It was hard and I cried alot, but I grew stronger each week,” says Stevie.

Stevie remembers her late twenties and thirties as a happier time during which she cared for her partner’s two children, took them to school every day and enjoyed a good life with her family. She continued to have psychotherapy, but it took until she was 44 years old (she is now nearly 50) to get her true diagnosis – autism.

“I always struggled to fit in and I thought it was my fault, something about my personality that was wrong. Because of my late diagnosis, I learned to mask well over many years and I’d burn out and need time alone. Now that I know that autism is a life-long condition, which will mean I will probably always struggle being with people too much and need time on my own. Now at least I understand myself more and can take measures to mitigate and avoid burn out.”

Discrimination and unconscious bias remain

Although Stevie thinks that there are more diverse ethnic groups working in mental health services than when she was seeking support, she says that discrimination and unconscious bias remain in black people’s experiences of healthcare.

“There’s a lot of stereotyping around black people and mental health. There shouldn’t be a one-size-fits-all approach, but sometimes there seems to be – even with physical health. For example, I took my elderly dad who has dementia to a GP appointment at his surgery in Haywards Heath recently, because he had problems with the skin on his hands. The GP looked at his hands and said, ‘well, it’s hard to tell on black skin’! And I thought, ‘did you really just say that to my dad? Don’t you train to treat people of all ethnicities? Even after all these years, I still find myself biting my tongue.”

In Stevie's opinion, discrimination and unconscious bias in mental healthcare remain barriers to people coming forward for support. “There is greater awareness now, but staff still aren’t always trained to be culturally sensitive in the care they give to others,” concludes Stevie.

“It’s hard when you don’t see people like you in mental health services, particularly at the more senior levels, and when people are pushed towards certain diagnoses. My cultural context was often met with unconscious bias, based on people’s assumptions and interpretations, although I hope this has improved since I first sought help.”

* The use of the term ‘mixed-race’ is a direct quote from Stevie, which she is comfortable with. We acknowledge that some people prefer the term ‘mixed heritage’ or ‘of mixed ethnic background’, because ‘mixed race’ can imply that there is purity of race when race is really a social construct.