Over the past months, many people who care about me have wanted to understand how PSC could impact my health and quality of life moving forward.

I always struggle to provide an answer I feel is adequate. I say “fatigue” and “itching” but those words never quite capture the patient stories I have seen over and over on social media. I also find it hard not to delve too deeply into scientific medical language and statistics during these conversations. They’re meaningful and descriptive elements I fall back on readily, but they don’t make the picture easier for my friends and family to understand.

Not long ago I came across an essay posted on Facebook by a PSC patient. It eloquently described his struggles, conveying the impact and emotional weight I have difficulty communicating. He gave me permission to reproduce it on my blog and I’ve linked it below. If you are sure you want a deeper understanding of how PSC patients experience the disease, I encourage you to read it.

However, the essay describes a difficult situation. If you personally don’t feel that understanding more about these hard symptoms and life impacts is the best way for you to approach our relationship, that is 100% fine with me. So this is your warning. Don’t read it. There’s no reason you need to. Posting this is a way to me to give voice to something I’ve struggled to communicate, but it doesn’t mean it’s the right conversation for you & I specifically.

Also, not all patients get all of these symptoms. The essay’s described situation is not an inevitability for me. At the same time, PSC is a progressive disease and it’d be silly for me to assume I’ll remain asymptomatic for the remainder of my life.