Wendy Wheat began experiencing chronic fatigue at the age of 35, but doctors didn’t diagnose her with primary biliary cholangitis (PBC) – a rare, incurable liver disease that causes constant exhaustion and a debilitating itch – until five years later. Here, she shares her journey to diagnosis, and what it’s like to live with this life-altering chronic condition.
Diagnosis was a relief
‘When I first described the fatigue I was experiencing to my GP, I was diagnosed with an underactive thyroid and sent away. A few years later, still utterly exhausted, I returned to the doctor only to be told that “everybody feels tired”. I knew something wasn’t right, but they wouldn’t take me seriously. I was referred to a dermatologist because of my relentlessly itchy feet, and a haematologist when a blood test showed I had abnormal red and white blood cell counts. Neither of them could get to the bottom of my symptoms. My tests did come back showing elevated liver function, but instead of referring me to a specialist, my GP asked how much alcohol I was consuming. The suggestion that my condition could be self-inflicted was so frustrating.
‘Over the years, I was misdiagnosed with chronic fatigue syndrome and keratoderma, which can also cause extreme itchiness. Shortly after receiving treatment for the latter, my hair started to fall out. It was never confirmed whether the keratoderma treatment was the cause, but my GP told me that I “just needed to live with it”. I resorted to wearing wigs to cover the missing patch of hair at the back of my head. Five years after I first sought help, I was finally referred to a hepatologist, who recognised my symptoms and ran some additional tests to confirm a diagnosis of PBC. I was so relieved to finally have an explanation after years of not being listened to. I’m a receptionist for the NHS and it still took five years for me to find answers – it just goes to show how little awareness there is of PBC.’
Daily life can be a battle
‘Living with PBC is an ongoing challenge. I can sleep for 10 hours and still wake up so tired it’s like I’ve not been to sleep at all; I just want to snooze the alarm, roll over and spend the day in bed. But I work full-time, so I have to get myself up and start my day. My brain fog means that I often forget people’s names, which is especially problematic when speaking to new people is a huge part of your job. I try to stay strong and positive, but it can be a struggle. One of the toughest things is that most people haven’t heard of and don’t understand PBC, and because I often look well on the outside, it’s hard to convey how I’m really feeling.
‘Even my closest family members have found my diagnosis of PBC difficult to process. My dad went as far as to imply that the NHS had made the condition up, a reaction that I now understand was a kind of denial – no one wants to hear that their child has been diagnosed with an incurable illness. PBC is a lifelong condition that can worsen over time. If not effectively treated, it can lead to the need for a liver transplant and, in some cases, premature death. That’s a lot to take in and deal with. I had also been single for several years and did not know how my condition would affect having a relationship – although since meeting my new partner 14 months ago and explaining my condition, which he had never heard of, he has been incredibly supportive. It’s been an education and a journey for us all.’
Support is vital
‘When I was diagnosed, my consultant directed me to the PBC Foundation, a patient group offering support to people living with PBC. Everyone is on a different path, and it can be easy to fall into the trap of comparing yourself to others, but from my first meeting, I’ve found such solace in getting to know others with the same condition. At the time, my nearest local PBC Foundation meet-up was in Sheffield, over an hour’s drive away, so I volunteered to start my own group where I live in Nottingham. I now count the members of that group among my closest friends; only they can truly understand and relate to what I’m going through.
‘My advice to anyone living with PBC would be to learn about your condition so that you can advocate for yourself. This is so important, as each person experiences their PBC in a different way, and knowledge about your own condition is power when speaking with healthcare professionals. I’d also advise reaching out and finding that same community. I never thought my group would be as successful as it is, but it’s gone from strength to strength and made such a difference in people’s lives, as well as having an enormous impact on mine.’
PBC: The facts
• PBC is a rare, autoimmune, cholestatic liver disease, where a build-up of bile and toxins (called cholestasis) and chronic inflammation can cause irreversible scarring of the liver
• Over time, PBC progressively destroys liver bile ducts, which are essential for digesting food, absorbing certain vitamins, and removing cholesterol, toxins and worn-out red blood cells from the body
• An elevated level of ALP (alkaline phosphatase) and bilirubin in blood tests are among the surest ways to diagnose PBC
• If left untreated, PBC can lead to liver failure
• PBC impacts day-to-day life, with symptoms including severe fatigue and a debilitating itch
• PBC affects nine women for every one man, at an average age of 50
• Although rare, PBC accounts for approximately one-tenth of liver transplant activity in the UK
For more information and support, visit pbcfoundation.org.uk, britishlivertrust.org.uk and liver4life.org.uk.
This article has been commissioned by Ipsen. Ipsen also provided editorial content for this article. ALLSC-UK-001474 | Aug 2024.
