I am going to touch on something that I am sure a lot of people with a liver disease have come across and that is, stigma. Having to explain ourselves on a regular basis is a frustration that we have to endure in order to put to bed the notion that not all of us sufferers are suffering because of alcohol addiction.
The stigma is huge and this I believe is in part down to a combination of ignorance and lack of education.
I fully understand an addiction is also an illness and, during the past 11 years, while having PSC, it has opened my eyes to a whole world of suffering that I never could of imagined was so bad. Alcohol consumption over a long time is only the tip of the iceberg. If we actually listed all of the different types of liver diseases, I think the mind would boggle even more.
I remember when I first got diagnosed with PSC, I also didn’t know what it was and actually, I can honestly say that I was not really aware of many types of liver disorders at that time.
As we all know, liver disease is a silent illness which, in my opinion, makes it a little bit harder to live with and comes with a stigma attached. I say this because the physical effects only show later as the disease progresses and often the effects do not even show.
You may feel tired, itchy and often have pain, and when you get to the point of explaining why you are the way you are, you can see it in the other person’s eyes that they immediately think that you have been downing bottles of vodka every day for the past 5 years. This is where the word stigma crops up again.
The next part… You mention PSC and that becomes like opening a can of worms. If it isn’t bad enough that someone has made their mind up about you before you have opened your mouth, when you mention that you have a liver disease that is non-alcohol related, you can see the other person switching off. This has happened to me many times.
From my experience, the only people that have heard of PSC outside of a hospital are sufferers, close friends and family. This makes PSC a unique and rare disease.
If we were to make it our mission to tell one other person about PSC and in return, ask that person to pass it on to one other person, we may help to make more people aware of the illness and receive recognition for the suffering we endure.
“Education is the most powerful weapon which you can use to change the world.” – Nelson Mandela.
Stay strong, stay positive and thanks for reading.
Peace, Love and Light x