13 Years Undiagnosed

13 years I went undiagnosed with POTS, 13 years of bullying, isolation, judgement, self judgment, exhaustion, fatigue, mental fatigue, brain fog, orthostatic intolerance, sweating, anxiety, depression... GPs would tell me I just need to exercise more and eat more leafy greens. I was dismissed time and time again. I would go to the gym and get post fatigue malaise afterward and feel a lot worse so it had the opposite effect of what I was told. I was thrown into mental health services, counseling, nobody listened to me, I was constantly telling people that I am exhausted and fatigued to only be told that I would grow out of it, it is just hormones, you are being dramatic, you are hard work, you just need to get a job, you just need to eat more healthily, you just need to do some yoga and meditation, you are just lazy... I did not know what was wrong with me, everyday was a battle blindfolded, and I would be so exhausted that I could not even talk to people. Just insane amounts of anxiety, I was just stuck in fight or flight mode all the time, paranoia, insomnia... I could write a 3 book trilogy about my story. I have been shouting in my own mind for years. I knew there was something not right with myself, I knew, but I was told otherwise.

I was big into spirituality, so I associated my situation as being in some type of ‘dark night of the soul’ experience but no, this is physical and it is painful. This illness is not my personality and it never was, my vehicle is dysfunctional and damaged. I read a lot of self-help growing up. I did not just sit around, well, I did, but I wanted to get better. I listened to my body, trust me my body knew what I needed, so I drank a lot of water... I meditated, I did yoga. It helped at the beginning; sometimes today I still meditate if my mind is going crazy. I journalled, which I still do today and have done for many years. I went to acting classes which did help with confidence but I could not maintain as I would be exhausted after every class and need days upon days of rest, same as exercise, but with exercise it was worse, I would get post fatigue malaise after and feel terrible and be bed bound and need days upon days of rest.

My body and mind have been through so much, and I do not think anyone will ever understand. The hardest part of the illness is the invisibility, nobody sees just how much you struggle and believe me I struggle, and my life has been a struggle. To leave on a positive note, I have just graduated from university. I caught COVID in second year which developed into ‘long COVID’ and I had to drop out. I recently went back and it was tough but I graduated. The only reason I was able to persevere is because I take a small dose of SSRI which I do not want to be on long term but it is the only thing that has helped me stand for that little bit longer and take away some of the fatigue. I am currently waiting for cardiology on the NHS, which I believe is a lost cause really, but we shall see. I have lost most of my faith in the NHS; they never ever listened to me. I saved up money to go private and see a specialist but I will give the NHS free service a go too... Yes, I saved up some of my student loan to go and see a private specialist because the NHS is decades behind in research for those with chronic illness. The NHS is great for some things, do not get me wrong, but they are decades behind in research about chronic illness. I have lived my life in darkness for too long and I need more support, help and answers. I do not want anybody to go through the struggle I have gone through, my hope for the future is there is some medicines out there to help more people with POTS. We need cures and answers and it needs to be so much easier for people to get diagnosed and not dismissed!