When you are going through the daily struggles of living with a rare disease, you feel alone. It is hard to accept the support from family and friends because they cannot understand how you feel. Sometimes, people even become misdiagnosed from this lack of understanding.
I have experienced all of these emotions and frustrations living with guttate psoriasis, but I, along with many others, have found comfort and support from YouTube, of all places. When I am feeling especially down about my condition, I will search for YouTube videos of other patients, so the platform has become an invaluable tool that I use to hear other people’s stories and feel more connected with my community of patients, even visually.
Nathan Wheeler from Christchurch is one of the rare disease spokespeople on YouTube who is helping patients like me, who need to be reminded that they are not alone.
Nathan has ulcerative colitis, and he spoke openly and emotionally about his journey with the disease on his YouTube channel.
Nathan describes how this journey started when he was just 18, when he was told by doctors that he had just two hours to live. But Nathan also describes how he noticed blood in the toilet years before this and how his doctor only prescribed antibiotics as treatment. In no time at all, doctors were performing an emergency surgery, and Nathan work up with a stoma that he has for life.
The mental part of ulcerative colitis has been the hardest for Nathan to deal with, but that is the part that he is working to change with his YouTube platform. He wants to change the stereotype and stigma of colitis and also show that it is not only the older generation that suffers from it.
Nathan’s last piece of advice?
“Talk to someone, anyone, about it. […] The worst thing you can do is keep it to yourself.”