Rachel

Hi I’m Rachel and I was officially diagnosed with POTS in December 2020 after a referral to a cardiologist by my GP. I think it is fair to say I have always found life challenging in various ways. I was labelled as highly sensitive and a perfectionist from an early age and although I did really well in school and had so many amazing opportunities in life, I always felt that little bit disconnected, like I was living a story.

I now know growing up was a traumatic experience but at the time, to me, it was just normal. Issues like feeling unwell, faint, tired, achy or being pale and teary were just inconveniences or things that would cause more trouble, so I locked most of it safely away in my mind and body. It might seem impossible- how can someone conceal or ignore almost fainting or being in pain – it turns out it is possible if you feel under threat.

I gradually managed to get through a degree and teaching qualification, but really struggled with my mental health, including an eating disorder. I worked with passion and devotion in my role as an Early Years teacher, but my body could not cope. I got frequent throat infections, was constantly exhausted and eventually started to have functional seizures and vasovagal syncope episodes whilst at work. My career came to a very sudden end and it felt like my life had fallen apart. Little did I realise at this point that orthostatic intolerance may have been contributing to these episodes, not just my mental health condition.

A lot of my symptoms were hidden by mental health diagnoses

Now in my mid-thirties, I feel like I am battling the eye of the storm my body worked so hard to save me from in the past. As I become more familiar with the symptoms of PoTS and how they affect me, the more I realise that a lot of my symptoms were hidden by mental health diagnoses and by my fear of having any physical symptoms brushed off by medical professionals.

My GP has always been really supportive of me finding the right support and she has also been really open with me about when something is not her specialism, which PoTS is not. I feel she has always been there for me, even if she hasn’t been able to help, which was why I decided to mention PoTS symptoms to her about 5 months before I was diagnosed.

I still question whether my symptoms are genuine, partly because my symptoms of increased heart rate and dizziness and fatigue became worse and more apparent during the beginning of the Covid pandemic – maybe I am just anxious, but the emotions didn’t match.

I know I was very lucky to get a diagnosis as quickly as I did but it felt like I was given this diagnosis, put on Midodrine and sent away. I was terrified! My heart rate and blood pressure were up and down, my GP couldn’t help and contacting a cardiologist in the middle of a pandemic isn’t easy. In fact, PoTS UK has been my main source of information- thank you.

Unpredictability and lack of clear explanation

I am still highly symptomatic despite medication and lifestyle changes, so I am currently being reviewed by an endocrinologist too. I think what I have found most difficult with PoTS and other chronic conditions, is feeling like control of my life is slipping through my fingers. The unpredictability and lack of clear explanation (in my case) behind what is causing my symptoms makes me feel unreliable and quite frankly, useless. I have always wanted to help others and be a good friend, but limited upright hours mean I can’t do that in the ways I used to. I can’t even focus to do crafts or enjoy a series on TV some days.

For the last month, I have been experimenting with using a wheelchair to help me get out, which has been useful, but I still need to work on my mindset around this. Reading other personal stories has helped with this, otherwise I just constantly beat myself up – sound familiar to anyone?

When I was teaching I always believed that we never stop learning and chronic illness is definitely a very big learning opportunity, not just how to manage your health but learning how you need to relate with the world around you to feel alive. I am learning that it doesn’t have to be about achievement or failure, what we can or can’t do, but it is about performing experiments and drawing conclusions that help us (it’s harder to give yourself a rough time if you don’t put a right or wrong label on it).