When You Get a Diagnosis and the 'Honeymoon Period' of Relief Ends

With both of my mental and physical health issues, I was always desperate for a diagnosis before it happened. And when I got them I was always relieved. Part of it was the validation, that people had finally listened to me when I told them something wasn’t right. For years I was just passed around different doctors and therapists having countless blood tests and other tests, being asked the same questions by different people.

My care coordinator under the adult mental health (MH) team was the very first person to really listen to me and actually dig deep enough to understand what was going on with me. She was the one that really pushed to get my borderline personality disorder (BPD) diagnosis. I even remember her asking why I was so desperate for a diagnosis and what would happen if I didn’t get one. My answer was that it meant I could start separating things. I could start figuring out what was “me” and what was “BPD” and what I actually needed to recover from. But then when I got the diagnosis it hit me quite hard eventually because I realized just how much BPD affected me. I felt like I wasn’t a person and my diagnosis defined me. It took me a while to really figure it all out and see how the other MH diagnosis’ all linked into it. Eventually, I have been able to separate things to an extent (they’re never going to be totally separate though) and I know that I am a person regardless of a diagnosis.

But with my physical health, it was all very different. I had to fight for five years (about the same amount of time it took to get anywhere mental health wise too) to get anyone to take me seriously. And if it wasn’t for me going to university and meeting my current general practitioner (GP) I honestly don’t think I would have a diagnosis or any kind of treatment plan now. I’ve had pain all over my body for as long as I can remember, and then when I was around 16 it got a lot worse. The solution was to just do blood tests and give me Naproxen, which didn’t really work. I was terrified of my very first blood test but I’ve now had so many that I can sit and watch them do it and I’m not phased at all – I’ve lost count of how many I’ve had now. Eventually, I had to stop taking Naproxen because I got put on Sertraline; then when my pain got really bad again I got put back on it alongside Omeprazole to protect my stomach. I still hadn’t been referred anywhere and no one had tried to find out what was causing my pain.

I eventually found a really good GP at my university who is really understanding of both my mental and physical health and she was listening when I said my pain was getting worse. She didn’t question giving me stronger meds for my pain or anything else that cropped up. I finally felt like someone was taking me seriously and was willing to help me – but I still didn’t have a reason. Then seeing rheumatology happened and I finally had answers.

But then a few days after, once I’d found out more about hypermobility syndrome and fibromyalgia it really hit me. I realized that when I didn’t have answers I had this tiny little bit of hope that it could be cured and that the pain would one day be gone. But then I realized with these illnesses there is no cure, and I just have to learn to live with it. It was no longer a relief – it was becoming a burden. I then began to panic about things like new meds with new side effects, if I’m going to be able to hold down a job or have a family and what would happen if I got really bad – the list was never-ending. That “honeymoon period” of relief was gone very quickly.

I knew that getting a diagnosis would change my life in one way or another, but it hit me a lot harder than I expected. Now that I knew things I had new things to think about. I also had to think about my mental health and how they all tie together. This was all while trying to juggle university, etc.

My reality soon became trying to get things under control. Sorting out my meds to keep me semi-functioning. It was hard to accept that I need so many meds at the age of 21 and people always say I’m “too young” to be in pain and be on so many meds. I take a minimum of 17 tablets a day, on bad days I can take up to 25 a day. That one appointment with a rheumatologist had a massive impact on my whole life – in both a good and bad way. Now it’s several months since my diagnosis (years for my MH) and I still have all those worries going through my head and I still have to think and try and keep things under control (as much as I can). I’ve had to adjust to a life where I can’t make too many plans and I don’t know if/when I’ll be well enough to make plans and attend them. I had to accept that my life is totally different from most 21-year-olds.

That honeymoon period was great while it lasted, but when it crashed, it plummeted. Most people think that everything is fine when you know what the problem is, but that isn’t always the case.

Getty Image by kozorog