My 10-Year Diagnosis Journey

When I was 18 I went to the GP and said I thought I might be depressed.

They prescribed me a self help book, which would have been filled at the library, but all their copies were checked out. I was also given a number to self-refer for therapy. They took my details and said they’d be in touch and then never contacted me. I had no idea at the time that this was setting the tone for the next ten years of my life, until I was finally able to get an assessment for Borderline Personality Disorder.

In those ten years, I’ve done a huge amount of Cognitive Behavioral Therapy: three times with the NHS, once at university, and once through chat messages as part of a clinical trial. I’ve also had counselling at university and privately. After being nervous about it for a while, I tried four different antidepressants in one year, which mainly made me extremely physically fatigued, hyperactive and unable to hold a thought in my head for more than ten seconds. I continued to struggle with depression and anxiety before, during, and after all of these treatments.

Over time a build up of bad experiences also started to take a toll on me. In my first year of university a student counsellor told me that she didn’t know why I was in counselling because I seemed fine. I had a great trainee GP for a while, but after she left I was passed on to a GP who told me to try gardening (as if I could afford to rent a place with a garden in Bath as a junior in games media). When my employer added private medical insurance as a benefit, the provider told me I was too unwell for them to offer any treatment and I needed to go to the NHS.

In the middle of the pandemic, I had a difficult assessment that I cried my way through, and was told they couldn’t do anything for me but I should buy a notebook for CBT skills. This year I had a telephone assessment with a private therapist who shouted at me that ‘CBT always works, you must have not been doing it properly’. Then a few weeks later the private service that referred me to her breached confidentiality and sent her my private information, resulting in her reaching out to me and causing me to panic.

Self-advocacy and self-diagnosis

Eventually I realised I needed to learn to advocate for myself, so I started to do my own research to find out what I needed to ask for. I’d been wary of self diagnosis, having grown up on the internet in places where things like depression and self harm were romanticised. Also I found it difficult to see my symptoms objectively because I’ve experienced them for my whole life, so I had no idea whether they were ‘normal’ or ‘extreme’. I spent months reading over diagnostic criteria and trying to weigh up whether or not they actually described what I was experiencing, as well as going over events in my past. Eventually, I decided I would ask my GP to be assessed for specific conditions that could fit, starting with BPD and ADHD.

Even though I felt that BPD criteria could match my internal experiences, often descriptions of BPD symptoms are written from an outside perspective, and I rarely match those descriptions. I don’t have a long string of volatile relationships, I’d mostly avoided romantic relationships altogether and I didn’t even have long term friendships. I don’t have emotional outbursts, I dissociate so strongly from my emotions that I can’t recall how I felt during most of my memories, even good ones. In the end, I wasn’t diagnosed with BPD partly because I have a job and I’m currently in a long term relationship.

Though I didn’t receive a full diagnosis, I was offered treatment, which was a positive outcome. The research I did and discussing my experiences with a psychiatrist helped me understand the problems I’m facing and explain them to others. Being told that having a job and a relationship mean I can’t have BPD made me sure that although others can’t see how much I struggle to stay in work and maintain relationships, they’re still real struggles caused by mental health issues and not personal failure.

While I was researching diagnostic criteria, I read some of the book ‘The Body Keeps the Score’ by Bessel van der Kolk, which changed my perspective on diagnosis. Depending on how you interpret the criteria for BPD, I could either have every symptom or none of them, but diagnoses are just a way of grouping people with similar symptoms in order to try and quickly reach the most effective treatment for them. They’re not an accurate way to describe an individual’s experiences.

In my experience, however, diagnosis was sometimes used to block or permit access to treatment in underfunded services like the NHS, or private services that don’t want to go to the trouble of providing for “expensive” long term illnesses, which led me to feel that getting a diagnosis was essential if I wanted to have any chance of recovery.

Ultimately, I feel that going through this process showed me that a doctor, therapist, or psychiatrist cannot tell me what my experience is. A diagnosis can’t define my struggles. Now, instead of asking myself ‘is my problem severe enough?’ I’m asking ‘do I need help for this problem?’

If I ask for help, and I’m refused, it just means I need to find somewhere else to ask, not that I don’t actually need help. If I get treatment that doesn’t help, I just need to try something else. If I feel like I’m being misunderstood because someone is trying to fit me into a criteria, it doesn’t mean my experiences aren’t significant.

This shift in my perspective has given me the self-assurance I needed to overcome the fear of not being taken seriously or having a bad experience and continue to try and get help for my mental health.

Continuing to seek help

Even though I have a better idea of what to ask for and how to ask for it, finding help is still an uphill battle. I had a therapist who was doing Cognitive Analytical Therapy for BPD symptoms with me. But even though my work-provided medical insurance covers unlimited therapy sessions, I was referred to a different private company who send patients back to the NHS if they need long term therapy, so I was discharged.

Most insurance policies specifically exclude long term conditions like personality disorders, so it’s possible that I won’t be able to access mental health services through any private insurance provider anymore. Meanwhile the demand for NHS services continues to rise, and its capacity continues to shrink due to government underfunding.

Another problem I face is that though I’ve managed to remain employed, it hasn’t been easy, and it’s something that is constantly on my mind during the games industry’s current period of layoffs and huge changes. Return to office policies particularly affect me, as being able to work hybrid and remotely during the pandemic has made me aware how unhealthy full time office work was for me.

If I were to be laid off, as over 10,000 others already have been in 2023, what are the chances of me finding work at a company that is sympathetic to my needs? Also, if I’m receiving treatment for my mental health through private insurance provided by my workplace, I’d lose access to it if I was laid off or had to leave my job.

At the same time, I believe the games industry is a huge reason I’ve been able to not just work, but enjoy working and do work I’m truly proud of. It’s becoming common knowledge how neurodiverse the industry is, and my experience definitely reflects that. As someone who struggles with constant loneliness and with building and maintaining all kinds of relationships, in games I’ve had the joy of working with so many people who I can communicate and collaborate with easily, people who have an understanding of mental health issues and make the spaces they’re in so welcoming.

At this difficult time, with government policy also becoming increasingly hostile towards unemployed disabled people, I hope that the games industry can recognise the ways in which disabled and long term mentally ill people are disproportionately affected during layoffs and instability, and are far more likely to end up in a precarious situation. After a year of life-changing ups and downs, I hope that I can keep trying to preserve for others the feeling of community and belonging that I’ve experienced thanks to my games industry colleagues.

Written by Sarah (they/them)