Normal is Relative

I had weird symptoms going on for about three years before I was diagnosed with Primary Sclerosing Cholangitis. For a while, I was convinced I had a very large worm living inside my body. I went as far as naming it Tapey. Turns out I did have a worm, or several making a home of my digestive tract, but it they weren’t the reason I was getting chills, fevers and pooping a lot. 

I’ve been trying to figure out what to write about in this blog post since I sat down with the guys from Sickboy about a month ago. We chatted about my symptoms, experiences with doctors and embarrassing stories but we didn’t get to the mental battle I had, and continue to play with myself.

My experience living with a liver disease is pretty new and I’m still learning of ways to manage symptoms and shift expectations to fit more in-line with my health. It took several years of second guessing my symptoms, a lot of wasted time spent googling and really advocating for myself with doctors before I was diagnosed with PSC. Through all this I’ve experienced a lot of mental challenges along with the physical that come with having an illness.

When I was first diagnosed, I wasn’t given much information and thanks to the wonder that is WebMD I convinced myself I was going to die in 12-25 years. This isn’t the case, but knowing that my health will diminish with time has really changed my expectations for the future. My emotions immediately following diagnosis were all over the place. They went from fear, to super low self-esteem and despair, to denial, and to frustration.

These feelings were all part of my ride to acceptance and it took months. The thing is, I still occasionally revisit them on a smaller scale. Sometimes I feel crappy for not being able to stay up past 8 and having to bail on friends. Probably once every two or three days I decide that I can have a beer after work until Han tells me not to. Sometimes I decide I can go on an 8 km hike and then end up in bed for half the day after. That’s the denial I guess. I still have a hard time justifying to myself that it’s okay to take it easy. My disease, as it is now, is manageable, not fatal and would probably get it’s ass kicked by a lot of other diseases out there in a fight.

I’m writing this as though I have some conclusion or big answer, but I don’t. I’m happy, I have amazing support from my partner, my family and friends but things have changed dramatically and that can shake up your life quite a bit. To try and calm all this change, I’ve looked for new normal in my life. Ways to deal with stress that don’t require physical exertion. Changes in my schedule that mitigate the fatigue a bit. And it helps a lot. Sometime I’m dismissive about my disease, downplay it or make jokes about it. Maybe it’s not always the healthiest way to deal with it, but for me, it makes having PSC just another part of my life.

 

If you happen to have PSC, you should totally fill out this patient registry from PSC Partners. It provides researchers with a database of demographic info about the disease and makes screening processes for clinical trials WAY easier.

https://pscpartners.patientcrossroads.org/