In honour of PSC Awareness week I thought I’d write something a bit light hearted. There are many things that PSCers or anyone with a chronic disease have to deal with on a daily basis, here are just a few that I’m sure all PSCers can definitely relate to!
If you would like to help find a cure for PSC or find out more about the condition, PSC Support is a brilliant charity which provides up to date information, support for patients and families who are effected by PSC and also funds research into PSC. You can visit their website at: http://www.pscsupport.org.uk/
1. Waking up feeling like you’re 80 years old, having a nap during the day like you’re 80 years old, getting aches and pains like you’re 80 years old but knowing how to ignore it all when you have to and carry on without anyone knowing.
2. Telling people that you have a liver condition and getting replies such as ‘ohh i didn’t know you had a drinking problem’.
3. Pretending that your jaundice is just your natural, year round tan.
4. Getting blank stares and being bombarded with questions rather than answers when you see a GP, A&E staff, Pharmacist or basically any other medical professional that isn’t part of a hepatology team.
5. Being able to relate to how people feel with an extreme hangover, even though you haven’t touched alcohol for years.
6. Grinning and biting your tongue when people say ‘ oh but you look so well, you must be feeling good’.
7. Getting up everyday and carrying on with normal life even though you feel like your body is a block of led weighing you down and you could fall asleep standing up.
8. Doing whatever you can to relieve the dreaded all over itch no matter where you are, how you do it or what you look like whilst doing it!
9. Wanting to strangle people when they say ‘you might feel better if you get more sleep’.
10. Not knowing whether to laugh or cry when people with a cold think they can relate to how you feel on a daily basis.
11. Having an off day and suddenly realising the enormity of what you’re dealing with.
12. But always knowing how to make the most out of the life you’ve got and not taking anything for granted!
waiting for a liver. 
It’s very good Maxine and so true. I remember it well.
I have PSC been 11 years with it and it sucks I’m only 38 years old with 6 kids I have a heart of a LION blessing from GOD AND MY FAMILY KEEPS ME GOING IN LIFE
It does suck. A lot! But with a supportive family and a lion heart PSC will never win! Keep it up 🙂
13 years from trying to understand whats wrong, 5 years from PSC diagnosis, 2 years from crohns colitis diagnosis, but only in the last month I’m feeling 100% like this great post. thnks for making me lough..
I’m glad it made you laugh 🙂 sorry to hear you’re having a tough time at the moment. Stay positive, that’s half the battle won x
BRILLIANT!!! 🙂
This is a great blog post! I have suffered for 10 years now and always get the same responses to be being tired or “having a drinking problem” haha I look forward to reading more of your posts 🙂
It’s really frustrating isn’t it! I think it gets to a point where we become so used to it that it just goes over our heads! Stay well x
It definitely does! I live in London and would love to get involved with PSC support in any way I can. How would I go about this? 🙂
#8 is my favorite. Diagnosed 11 years ago. All these are great and I can relate to all of them!
#1 is me most of the time Tarin! Never a moment when I can’t sleep. Diagnosed about 15 years ago now
Sums it up completely. I have secondary sc caused by cancer surgery and can relate to absolutely being said.