Layla

My name is Layla and I am 18.
I believe I developed PoTS at age 14, but only became aware of the condition and was diagnosed when I was 17.

When I was 14, I started getting chest pains and breathlessness, so thinking it was asthma I went to A&E and they misdiagnosed it as an anxiety attack, as they usually do! I also had an instance around the same age while out shopping. I suddenly just felt really faint while standing and my mum said all of the colour had drained from my face. She took me outside to sit on a wall and I laid my head on her legs. Unsurprisingly I started to feel better after a few minutes.  It was only when I knew about the condition that things started making so much more sense!

It took about 7-8 months to be diagnosed. These were very difficult times as my symptoms became so much worse. I had multiple PoTS attacks a day, I was losing weight and eventually stopped leaving the house and attending college.  I had to use a wheelchair if I really wanted to go out and if I tried walking or standing the floor felt so unstable and I’d feel lightheaded, meaning that I would have to sit down quickly so I didn’t pass out.

I felt embarrassed and stopped doing the things I liked which resulted in me becoming really depressed. Every day I felt a complete wreck, I couldn’t shower, I couldn’t make my own meals, I couldn’t do anything!

Not only do I suffer with PoTS but I also have autism, bipolar disorder and I am currently having investigations for Crohn’s.

To alleviate my symptoms I like taking baths with bath salts and adding salt to as much food as possible. I still haven’t tried medication as I am not great at taking tablets.

Since my diagnosis a year ago I have had many ups and downs, but my anxiety is more under control. As my heart rate used to go up to 170+ I’ve tried not to constantly take it anymore because I find this makes my anxiety worse.

I just want people to know that you are not alone and I know you have probably been invalidated and felt unsupported, but you are a much stronger person than anyone could ever possibly imagine and I am proud of you!

My photo shows me doing the things I want to do again, being creative and myself!