I have had my fair share, some may say more than than my fair share, of chronic illness diagnoses. One of the hardest to come to terms with has been fibromyalgia.
A diagnosis of fibromyalgia is the complete opposite; some people have symptoms for years, with doctors working through different diagnoses, hunting for the right label. It can feel like you’re being called a fraud, or being told you’re making up your symptoms or imagining them. I had seen my GP, who had said my symptoms suggested fibromyalgia but asked if I wanted to see a specialist. I hoped a specialist could offer more certainty and a clear management plan but it took a rheumatologist 10 months to say ‘it’s probably fibromyalgia’ and usher me quickly out the door with a website address for Arthritis Research UK. When I’d been told I didn’t have numerous, apparently ‘more serious’ illnesses, I had a terrible mixture of emotions when I was told it was fibromyalgia. What had happened was that illnesses with clear diagnostic criteria and treatment plans, such as arthritis, had been ruled out and I was left with an illness that had no test or scan to give a definitive diagnosis, nor does it have a specific medication or surgery to treat it. Feeling completely exhausted and having unexplained pain throughout every fibre of your being is incredibly wearing both physically and mentally so relief can be an emotion that’s high on the list; finally having a label can help, as it means you know what you’re fighting.If a label has been a long time in coming, a diagnosis can lead to some hope of being able to manage symptoms and move towards recovery of some quality of life. A diagnosis of fibromyalgia, however, feels quite disappointing. You only have to Google a few forums to see that people do not manage the illness, people do not have clear management plans and do not have hope that they will be able to recover a good quality of life. This is not everyone of course – it is possible to manage fibromyalgia and when presented with a diagnosis of any chronic illness it’s important to ensure you understand the illness and what it means for your life. Since I had had the diagnosis hanging over my head for some time, I had done plenty of Googling; knowing there were other people out there struggling with similar symptoms was reassuring, even comforting at times, but it’s really hard to hear about how disabling this condition can be. It’s not uncommon to experience a kind of grieving process as it’s confirmed these symptoms are part of a life-long, life-altering condition. You have to come to terms with losing the life you once had. This can be incredibly sad but the good thing about a grieving process is that you can work through it as you come to terms with your new life. So, coming to terms with a diagnosis of fibromyalgia, I had to find the inner determination that I will keep fighting, I will focus on the positives, I will focus on what works, and I will not let myself become the illness nor will it define me or become my identity. I’ve had to work hard to be OK with there being no quick or easy fix, I’ve battled with blaming myself for developing the condition and I’ve had to be diligent not to fall into a pit of self pity.
It is very common for people with chronic physical illnesses to struggle with mental health symptoms; I would be lying if I said my mood was not significantly affected by my extreme fatigue and pain but I’m glad I’m able to keep my mental state stable using skills and techniques learnt in therapy. It’s really important that anyone coming to terms with any chronic illness takes the mental impact seriously. It may be important that a mental illness, such as anxiety or depression, is also treated. Coming to terms with a chronic illness is incredibly hard but it is possible. It takes time so give yourself a break, don’t beat yourself up, be patient with yourself. There are ups and downs, good days and bad but with a positive decision to manage and some alterations, life is still there for the living.