Jade

Hi, my name is Jade and I’m 26. My journey with PoTS started after I contracted sepsis in March 2022. My diagnosis came in 2024 after two years of struggling with not knowing what was wrong with my body.

After finding the answers to what was wrong I thought medication would fix everything, little did I know that it would make my symptoms worse.

My symptoms range from heart palpitations, sweating, headaches, blood pooling after baths and showers, fainting, exhaustion, shaking, breathlessness, nausea, blurry vision, brain fog, chest pain, inability to stand for long periods of time if at all and more.

There are days that I can get out of bed and go for a run and be what looks like normal (the truth is I mask my symptoms) but then there are days that I can get up and faint or I’m completely unable to get out of bed at all. I feel like this is the most confusing part of having PoTS, especially for others who see me on the days that I feel just about well enough to see people.

My entire life has changed since developing PoTS and I feel like my journey would have been made a lot easier if there was more awareness around the condition. While waiting for diagnosis I was constantly admitted into hospital and told that my heart rate was abnormal but there was nothing that they could do and I was just added to a waiting list… this took 2 years! 2 years of being confused and sick without any explanation and told it was due to ‘anxiety’, 2 years of being confused as to what was going on with my body and why I was so exhausted, fainting and just generally feeling unwell and 2 years of being overwhelmed by how my body just wouldn’t work the same as before!

Most days I struggle with things that others do without thinking. This includes eating, washing, standing, walking, going up the stairs or even getting out of bed. Most of the information on I gather on PoTS does not come from doctors or health professionals, it comes from reading the PoTS UK website or google! The majority of doctors are unaware about what PoTS actually is so I’ve had to educate myself.

Raising awareness is such an important thing to me, the more we all know about something the more we can all do to help.