After my main support nurse retired many years ago, I tried to manage my mental health outside of the healthcare system, attempting to cope with my mental health issues alone. All that changed when my dog Sally passed away last year, as I was left unable to cope.
Around the same time, I moved house and subsequently started going to a different mental health centre and saw a new doctor who spoke to me about trying out different types of therapy. It was an informal meeting and it wasn’t followed up for many months to come.
As it turned out, my follow-up appointment was with a doctor who knew me, both from my time within the day hospital system and as one of my previous psychiatrists. I think we were both quite surprised.
It was at this point that it got interesting.
The doctor couldn’t get access to my old notes as they were all handwritten, so while he recognised me, he had no access to my diagnosis and previous treatments. In light of this, he suggested that it would be a good time to reassess my diagnosis. After all, with the passing of so many years it was quite possible that my condition had changed or that I might be presenting with symptoms of another mental health condition alongside those previously diagnosed.
I was never privy to how my original diagnosis was decided. In fact, it took a lot of begging from my side to even be told what it was, so the idea that I could receive a completely different diagnosis never crossed my mind.
Since then, the thought that I might have a different mental health condition has left me in limbo and while I am waiting for an answer I am working through the good and the bad.
The good side
It’s often said that it’s best to start with the good news, and I have found several things to be positive about with my re-diagnosis process.
As I said before I was never privy to how my diagnosis was decided, but this time I feel much more part of the process. The very fact that I was told I was being re-diagnosed made me feel involved.
I was also given a questionnaire to fill out in my own time and in my own words, explaining how I find life and the world around me. As someone who has always found it hard to speak out loud about what is going on inside, I found this process very helpful.
The questionnaire allowed me to go back to my childhood and to talk over the things I remember from that time. It included everything from believing my peers implanted things in my brain to read my mind, to a bullying teacher who was unkind to me due to my dyslexia and her behaviour allowing my peers to feel they could treat me in similar ways. By working on my re-diagnosis with the doctors I have been able to see how these events have impacted my mental health later down the line.
Of course, perhaps most important of all, the outcome of the questionnaire - whatever it may be - will give me a clearer overview of what is going on right now, and allow me access to services, therapy and medication that will manage my condition better.
The middle ground
Certain parts of the re-diagnosis process have been both positive and negative. For example, even though I understand the reason, it’s difficult for me that they may choose to speak to my family about me without me being present.
I know this will help them get a better view of me and my situation, but I admit the thought of people ‘talking about me behind my back’ triggers my anxiety. I guess that is the downside of anxiety though. You can try and reason with it as much as possible, but that doesn’t make it go away. It’s just something I must learn to live with.
The bad side
The hardest part of this process is the idea that my diagnosis could have been wrong all these years.
If I am diagnosed with something different, does that make me someone different?
Of course, the answer is no – I am still Sarah. My original diagnosis was treatable so it doesn’t mean that I never suffered from it, just that I may have learnt to manage it, so I no longer display the symptoms or fully fit the criteria.
I still have issues with my identity. There is a little niggle in the back of my mind which keeps popping up, asking: “but who are you, if they change your diagnosis? Who have you been all those years?”
While a re-diagnosis can be difficult because of the uncertainty it casts on both the past and the future, ultimately it is a good thing. Everyone evolves and as we change, our needs change.
Once the process is complete I will have more insight into myself and my condition and it will allow me to get the appropriate help that I need. This is something I need to hold onto through this process. I, and anyone else going through the same thing should remember that the process is not designed to erase your past, but instead, to help you grow.
NPS-IE-NP-00157 February 2021