During my time as a congenital heart disease patient I found very little to know information about myself. There is no support. There are no charities, helplines, nada.
If you google “asthma”, pages upon pages are put before your eyes – NHS Now, Web MD and iDoctor could display your symptoms in a neon sight and you would feel content. Eczema? No problem. Strokes? We can tell you all about that. However rarer conditions do not pull such results from the World Wide Web. Although this is sadly expected, it is incredibly frustrating to be faced with nothing when help is sought. They say the first step is asking for help, but what if people don’t know what help to give?
Congenital heart disease is a blanket term for any heart condition that requires intervention, and inhibits the patient to a certain extent. Some of my close friends experience similar qualms, sadness and frustration at the lack of funding and research into our conditions. Doctors are beautiful, brilliant people who share our lows and are the foundation for our highs. Without the NHS my life would be very different. Despite its faults, the NHS has saved all of us, at least once.
In 2016 I went to a conference for CHD patients. I arrived to find that I was the only patient under 50. Being such a young age, myself and my mother were approached by a few people – asking my story and why I was here with them all. Once the tale was told I was hugged and wished luck, but I didn’t really want to be pitied. I didn’t want to be told what I had experienced was awful or what my body had overcome was great – I knew this. I wanted to help other people like me. Young people.
I consider myself and my friends phenomenally lucky, but I also struggle with the idea I deserved this in some way – to be compared to conditions that were developed instead of diagnosed at birth or later in life is frustrating. I didn’t ask for this life, for the experiences I have and like me others will share in my anguish. Charities need to be started. Foundations need to be built to start bigger and better things for all of us, patients, parents and onlookers alike. Sometimes it’s okay to stop wishing for something and just do it yourself.
Stop wearing your wishbone where your back bone ought to be.