Matt
My name is Matt, I’m 27 years old, and my PoTS story began in 2017 when I was 22. In retrospect I have always been a bit unlucky with my health, but never thought much of things like hypermobility, allergies and asthma which didn’t affect my life too badly.
On the 12th of June 2017 I was on the train on the way to my job at a camping shop and quite suddenly felt very dizzy and light headed. It felt like I was hungover and hadn’t been hydrating properly for a whole day. I got off the train to have some water which didn’t help. I managed to get an appointment with my doctor that day who told me it was anxiety and I should seek counselling. I have suffered from anxiety all my life but knew this was very different. Nevertheless all of the various doctors I saw for the following years told me the same thing. I had two very difficult years of living with unexplained PoTS symptoms like dizziness, brain fog and a racing heart which triggered a vicious cycle of anxiety and panic resulting in a near constant state of agitation and discomfort.
Without answers
Without answers, and with a history of allergies, I tried altering my diet as I was very aware how much your body can be affected by what goes into it. This eventually led to me cutting too much out of my diet until I simply wasn’t eating enough, and I lost a lot of weight.
About a year in I became aware of PoTS and pursued a cardiology appointment during which I planned on asking the doctor if that might be my problem. I was fitted with a holter monitor and sent for an echo of my heart before my actual consultation. I got results by post saying that I was fine and would be discharged, so I never even got the opportunity to bring it up with a doctor at that time.
More research
As I did more research, I learned that PoTS is usually diagnosed by a neurologist so asked my doctor if she would refer me to one. She reluctantly obliged and said she was sure it wouldn’t lead anywhere. The neurologist I saw tapped my knees and poked my toes before telling me my nerves were fine and I explained that I think I should see an autonomic specialist so again, a reluctant referral was made. I finally had an appointment at the autonomic unit at the NHNN in London, and not long into my tilt table test it was stopped and I was told the data was pretty clear. I officially received my PoTS diagnosis a few days later and was elated. I finally had an explanation for everything that was happening to my body, and confirmation that the doctors were wrong just as I had been trying to convince everyone around me for the last couple of years.
Grieving the life you used to have
Grieving the life you used to have or thought you would have can be a difficult and very personal process that I think is important to talk about. Mentally and physically I can’t do things I used to be able to do, and I’m not where I thought I would be at this stage of my life. Most people go through school and early life feeling a sense of progression and a sense that each year should build on the previous and it can be disappointing when something knocks you back at an age when you feel you should be living your life and discovering who you are.
My advice for overcoming the last point would be to try not to compare yourself to others too much. Before I was diagnosed, I was in a very bad place, I didn’t have any answers and the distress caused by that made me feel suicidal. I was being looked after by my parents and working wasn’t an option. A couple of years on from my diagnosis, despite being ill I feel like I am finally living my life. I now have a good job working 4 days a week, I’m living with my girlfriend, I attend a weekly art class, and take part in an online quiz league. I’ve been on some nice holidays and looking back I am so grateful for what I have. Whilst I’m doing a lot better, it is still a constant learning experience of finding my limits and the balance of what I can do. I have also since been diagnosed with comorbidities which help to explain some other symptoms (EDS + EoE).
Living with an invisible chronic illness can be a lonely experience
Living with an invisible chronic illness can be a lonely experience. Nobody who hasn’t experienced it can really understand how it feels so I think it can be very helpful to connect with fellow chronic illness sufferers. I couldn’t find a local support group so I started one in my town which now has over thirty members and I have met some lovely people through it. That’s a positive which has come out of being chronically ill – it has meant that I have had personal conversations with people I otherwise wouldn’t have had, which has brought us closer together. Not only with other chronically ill folk, but also friends, family and co-workers. I get to discover a level of kindness in people which is unfortunately often difficult to see, albeit thankfully quite common.
I hope that by raising awareness, doctors become more aware of PoTS and diagnosis times are reduced. By far I found the worst part of having PoTS was not knowing what was happening and being repeatedly told by professionals that I was wrong about my own experiences. The biggest help was receiving a diagnosis, finally having an explanation for why I felt the way I did and having my feelings and experiences validated.