On average it takes someone 9.5 years to get a diagnosis of bipolar. Melanie details her journey after finally getting a diagnosis

I was diagnosed with bipolar just before Christmas. I’d been seeing my psychiatrist for a couple of years, but she was finally happy to formally diagnose me with bipolar at this appointment. We reviewed the medication I’d been taking and I was sent on my way, being told I was being discharged back to my GP.

I’ve been given the keys to the rest of my life

Although we’d suspected I had bipolar, and that’s what I’d effectively been treated for, it still sent me into a spin when I heard the words. The rest of the day was a complete a daze; I was on autopilot and just carried on with my tasks as normal. However, after a few days when it started to really sink in, I started to look around for help. There was a deep need to understand my diagnosis was a game changer. What I’d just been given felt life-changing in a way I still can’t explain. I’d been given the keys to the rest of my life.

Whilst I’d been given a diagnosis, it felt as if I’d been given a user manual with blank pages. No therapy was offered. No psychoeducation. I needed to talk about my diagnosis and create a box of tools to help me observe, understand and manage my condition. Getting a formal diagnosis felt as if it should have been a milestone in my life, a turning point on the road to wellness. However, it felt like an anti-climax.

Initially, I went to my GP about accessing therapy and he was surprised I hadn’t already been signposted to services after my diagnosis. However, he referred me to IAPT services who offered me a telephone assessment and then never followed up with me again with any offers of support. I waited weeks and weeks for a phone call, letter, anything. 

Diagnosed and then pushed off into the sea

I found solace in books about bipolar, as I bought every title I could find which I felt could help me. Peer support also played a part, as I found an extremely supportive community on Twitter. None of it really felt like enough, though, and I still really felt like some structured peer support that is available from Bipolar UK should have been offered. 

Several months later, I ended up at the hospital in a bad way. As I sat waiting for the psychiatric team to come and assess me, it span around my mind how I felt this could have been avoided if I’d been taught some skills to manage my bipolar. I even suspected the feeling of being diagnosed and then pushed off into the sea in my little boat, alone, to weather the storm, had contributed to me having this episode. Can I be sure that I could have avoided this, sitting alone in a stark white room, waiting for the crisis team late on a Thursday night, with some therapy? Not really, but I’d have had a better fighting chance.

Eventually I was discharged from the hospital into the hands of homecare team. They were amazing, kind, supportive, reliable and listened to what I needed. There was so much out there which I hadn’t been told about, so many services I could now access I was told. Finally I was getting what I felt I needed! I felt so hopeful and motivated to take on my illness now, determined to learn all I could about lifestyle changes and how to handle things I experienced.

I was left locked outside of accessing help

However, it never appeared again. I was discharged, again, back to my GP. No core team was assigned to me, no therapy appeared. I knew the therapies were there now, the crisis team had told me all about them, so I was left wondering why I wasn’t worthy. Was I not ‘ill enough’ , so I was left locked outside of accessing help? It felt like something mythical that resided behind an impenetrable door; only accessible by being privy to a secret password. 

Calling the core team, I asked what had happened and why I’d been turned away. ‘Your notes are very sparse, I’m afraid, I can’t see any reason recorded why that decision was made.’ Feeling deflated, I found myself back at the door of the psychiatrist who originally diagnosed me at an outpatients’ appointment. It felt like deja vu.

Stuck in an infinite loop

I’d make some advancements with my medication, that was a positive, but I had realised now more than ever how medication was only half the story. Everything I’d been through with the mental health services had felt reactive, rather than preventative. I was dealt with when I was in crisis, but then just sent on my way again to manage alone, likely bound for crisis again, stuck in an infinite loop.

This has all taken place within the space of just six months. Why do I feel the need to share my story so far? Because after talking to others in the UK who also have bipolar other psychiatric illnesses, I’ve realised very quickly that it’s not an exception to the rule. My experience resounded with so many people I spoke to, which on one hand made me feel like ‘at least it’s not just me’, but on the other hand, made me angry that it wasn’t just me. 

It impacts the rest of our life

Diagnosis itself can be traumatic. It can throw up so many questions about a condition which is vastly more complex than I ever imagined. Someone’s life can be turned upside down in that very moment. It’s not just the condition we need to know about, we need to know how it impacts the rest of our life (because it does). Healthy eating, exercise, medication side effects, sleep hygiene, an app. It was all things I’d never even considered as important before, but should form a part of a sort of ‘diagnosis workshop’, with ongoing support. 

I have been told that things have got better over recent years, but based on my experience, there’s still a long way to go. I’ve decided to advocate as much as I can for change, and continue to push as much as I can for the support I need.