I discovered my mental health diagnosis by accident - and now I can't even challenge it

If you were diagnosed with a mental illness, you’d want to be told, right? You might want to talk to your loved ones, reach out for professional help, or know what pills to take and what lifestyle choices to make. At the very least you would want know what was on your medical records.  

But what if you were diagnosed with a potentially serious lifelong mental illness without ever being told? What if, for more than two decades, every medical professional you saw knew something fundamental about your most intimate self that you didn’t? It sounds like the set up for a paranoia thriller. But this is exactly what happened to me. And it could happen to you. In fact, it might already be happening without you even knowing it.

It was February 1991. I was in my mid-twenties and had not long since met the man who would become my husband. I was also in a state of mind-shattering grief. Three months before, my father had died suddenly at the age of 58, while abroad. There was no goodbye; Dad was gone overnight.

Once the shock diminished a little (it has never disappeared), I found myself overwhelmed by contradictory feelings of elation (my new love), rage (stage two in the Kubler-Ross grief cycle), wretched sadness and fear that I would be so bound up in my father’s loss that I would push away the other significant man in my life. I was run ragged with insomnia and in need of help. So I went to my GP, who referred me to a psychiatrist at St George’s Hospital in south London. 

The psychiatrist saw me once, for half an hour, and wrote an eight-page report. I still don’t know exactly what it said. It wasn’t explained to me at the time and when I put in a formal request to see it, twenty-five years later, four pages were missing. The words ‘anger’ and ‘insomnia’ come up a lot, not surprising given my situation at the time. And it was from this report that a diagnosis of cyclothymic personality had been made - something I would only discover by accident over two decades later.

The word cyclothymic commonly refers to mood swings, but in a clinical context it describes a mental condition more akin to low-level bipolar disorder. Cyclothymia can morph into bipolar, or remain at a sub-bipolar level. At the time, however, no one told me any of this. As I recall, I was offered temazepam to help me sleep and there was a follow-up appointment with a psychiatrist at a local clinic, which came to nothing.  

I found out about the diagnosis by accident, after delivering a referral letter by hand from my GP to a physiotherapist for a rotator cuff injury to save time. Out of curiosity, I had opened the file containing my notes, and there were the words ‘cyclothymic personality’. I was so confused, I had to look it up.

After challenging my GP as to why it was there, she explained it had been ‘autopopulated’ onto my referral, meaning that the computer added this twenty-five year old diagnosis automatically to all my medical letters. But again I was confused - there were no other ‘autopopulated’ conditions on the same referral. No mention of my insomnia, occasional cysts, migraines or any other conditions for which, over the years, I’d been to see my GP. I went home in a state of shock. A stranger in a position of authority hadn’t so much described how I was feeling at a particular, difficult time in my life, but rather, fixed me with a label that had follwed me around for a quarter of a century. 

By now, I had moved from south to north London and contacted my new GP to ask see my records. I wanted to find out why I had been diagnosed with a mental disorder that I had never been told about, or offered treatment for. 

When they arrived, the GP called me in and told me that half the report was missing and so it would not be possible to know exactly why my diagnosis had been made, or who had made it. Most likely, she explained, a junior or administrator working off a symptom checklist would have made the call, rather than the psychiatrist who actually assessed me. She had no idea why no one had told me at the time and added - as if this made it any better - that cyclothymia was an outdated diagnosis, which would be unlikely to be made today, so I ‘shouldn’t worry about it.’ 

The GP did, though, agree that to label someone with a serious and long-term mental disorder on the basis of a half hour appointment, three months after a family bereavement, seemed a little hasty. She explained, however, that in spite of this, there was no way for me either to challenge the diagnosis or have it removed from my medical records. Moreover, I couldn’t take a copy of the report without making a formal request to the practice manager. This I have now done – twice – only to be ignored. At this point, I have only seen an incomplete version on the computer screen in the GP’s office and have never been given full access to it. 

Ironically, in the months before stumbling upon my own diagnosis, I was writing my first psychological thriller about a woman who, among other things, can’t escape a diagnosis of mental illness. In Caitlin’s case, it’s a decade-old spell of pre-natal psychosis; in mine it’s short-term mood-swings, misdiagnosed as a long term disorder. In the book, Caitlin’s diagnosis leads her to doubt herself and her past, while making her vulnerable to manipulation. It makes her unsure about who she really is.

Now, I am in the curious situation where my fiction is morphing into my reality. I too am questioning the person I thought I was back then; a young woman overwhelmed by new and intense emotions.  I wonder now whether I came over as unstable and unwell? I started taking the prescribed temazepam but soon stopped because it zonked me out. Looking back, I can’t help thinking some sessions with a counsellor would have done the trick. 

I also can’t help wondering who else might have slapped me with a label? Am I subject to higher insurance quotes or lower credit ratings? Such questions have kept me awake at night and brought back the very feelings of anger and powerlessness for which I sought help all those years ago. 

Why should an extreme diagnosis that I was never informed of and that would not be made today, remain on my medical record? The law says that I have no legal right to have it changed, only to have a note added to indicate that I dispute it. And since I cannot prove that I was not informed at the time, I have no legal right of redress there, either.

I am not anti-psychiatry. The protagonist of my novel is a neuro-psychiatrist and I believe new advances in brain mapping will be profound and, for the most part, positive. But it is also subjective, vulnerable to fashions and trends, and, often, highly contested. Yesterday’s cyclothymia might be today’s bipolar disorder and tomorrow, who knows? Labels can be useful if they lead to appropriate treatment. But labels that go nowhere and lead to nothing are worrying. Because they stick - even the ones we may know nothing about. 

Give Me The Child by Mel McGrath is published by HarperCollins (£12.99). To order your copy for £10.99 plus p&p call 0844 871 1514 or visit books.telegraph.co.uk