Truth is, I’m technically still undiagnosed. I gave up chasing a diagnosis a long time ago. I’d well and truly worked out that I had many of the symptoms of Myalgic Encephalomyelitis and I had access to none of the resources to chase a diagnosis. I certainly didn’t have the money to be attending specialist appointments over and over.
The lack of resources may have been a large influence to not trying harder to find an official diagnosis but it wasn’t the main reason. The main reason, for me, was that trying to fight for a diagnosis was going to make me more sick than it was worth. The effort that I had to put in to walk to and from appointments, to pour my heart out over and over to specialists, the stress of the unknown and the desperation of trying to make someone understand… It was too much. I quite simply didn’t have the energy.
I chose instead to research the condition myself and worked on ways to learn to cope. I’m certainly not advocating for not chasing your diagnosis, if trying to learn how to look after myself hadn’t worked I would have been back in that doctors office in a flash. Not to mention the road was still incredibly difficult and not free of its own challenges. Fortunately for me though, it helped. I found inspirational people to follow online, I started taking regular B12 injections, I purchased vitamins and supplements and (although only in small ways) played around with my diet. I reduced my exercise and my workload, my partner got on board and took on more responsibility around the house and together we did everything we could to minimise my stress and help me learn to listen to what my body was telling me.
Being undiagnosed, even now continues to haunt me. There are still days when I doubt my illness, after all, no doctor has ever confirmed my suspicions. There are still days when I think I made up this whole thing, that the last who knows how many years have been a figment of my imagination. There are still days when all I can do is lie in bed and cry because this life feels so unfair and I feel so, so alone. Being undiagnosed can be confusing, stressful and lonely all at the same time. But then again, sometimes being undiagnosed is none of those things and I can forget, even if just for a moment, that there is anything wrong with me at all.
I made being undiagnosed and staying undiagnosed work for me but I can’t stress enough that this may not be the right path for everyone. Please, if you feel you need it, get professional help.
How long were you left undiagnosed, or are you still chasing a diagnosis? I’d love to hear your version of how it affected you.
This post is Part 12 of 52 in the series – A Year of Growth.
The series is a celebration of the first anniversary of The Truth About M.E and is designed to help me grow through my illness throughout my second year of blogging. I look forward to having you along for the journey!