Gary Taylor, 36, from Meriden, Coventry, has primary sclerosing cholangitis (PSC) and ulcerative colitis (UC).
PSC is a condition which affects the liver as the bile ducts are narrowed or restricted, affecting the flow of bile. He also has ulcerative colitis – a condition which causes inflammation in the colon and rectum – which is closely associated with PSC.
As part of You Don’t Look Sick, our weekly series about people living with invisible illnesses, Gary explains that he first realised something was wrong in October 2008 after complaining about how tired he felt.
He tells Metro.co.uk: ‘Within a couple of weeks, I had jaundice and was admitted to hospital on 1 Nov 2008. I wasn’t discharged until 22 Dec.
‘It took a couple of years to diagnose the PSC. To begin with, I was diagnosed with Auto-immune Hepatitis.’
Eventually, Gary was told that he had PSC and that he would eventually need a liver transplant.
‘It was very surreal,’ he says. ‘I was told there was no cure, that the disease was progressive and the definitive treatment was a liver transplant. I didn’t know what to think and to begin with I put it to the back of my mind and tried to get on with life. I thought there was no way I’d need a transplant!’
But in 2017, the damage to his liver became so severe, he was told that he needed a new liver and he agreed to the surgery.
He adds: ‘Over 40,000 tablets and tens of procedures later (including liver biopsies, MRI/CT scans, Endoscopies, Colonoscopies) in 2017, I had a liver transplant due to the damage caused to my liver and my bile ducts by the condition.’
Although the transplant has helped his liver function, Gary, who works as the deputy managing director of tmwi, a media and digital agency in Stratford Upon Avon, says he still has good days and bad days, especially because he now needs to take anti-rejection drugs to keep his transplant working, as well as dealing with the effects of UC.
He explains: ‘On a good day, I can usually leave the house around 9 am, after going to the loo 6-7 times. I take 15 tablets a day; a combination of anti-rejection and immuno-suppressant drugs for my transplant and various tablets for my UC/IBD.
‘I can’t take my kids to school even on a good day, so this responsibility sits with my wife. If she isn’t well for any reason, we have to get my father-in-law to take them.
‘On a bad day, I may not be able to leave the house before 10 am. I will be in pain when going to the loo, usually 7-10 times before I leave the house and will need to stop at a service station or hotel on my way to the office to go the loo too.
‘I have to plan my route to work to ensure I’m not caught short on the way. If I have a client meeting in the morning of the next day, I always stay in a hotel the night before, as close to their offices as possible to reduce the travel time in the morning. More often than not I have to stay in a hotel a couple of nights a week because of this.
‘Usually, by midday I am ok… but more recently this has been getting worse and I am currently undergoing various tests/scans to determine how to change my treatment.
‘I am fortunate that I do not have to work a strict 9-5 job. Therefore I can mould my day around my workload and client meetings. I’ve got into a pretty good routine, but the worry of leaving the house needing the loo on the motorway or getting stuck in a traffic jam makes me very anxious still.
‘We also have to plan holidays carefully. There are many places we can’t go because the flights are early in the morning and I simply wouldn’t be able to make it to the airport!
‘Fatigue is also an issue. I probably operate on 60-70% of the energy levels of a ‘healthy’ person.’
For Gary, it s difficult because most people don’t see these symptoms.
He explains: ‘PSC is a hidden illness for many. It’s not until the later stages where weightloss and jaundice may occur that you actually begin to look ill.
‘At my worst in 2015-16, I’d lost 25-30kg in body weight and was very Jaundiced. I was still working but very conscious that I looked ill. I would have people stare at meet in the street or if I was in a restaurant and it was clear they were thinking why is this guy so yellow?!
‘I don’t have that now but I am still judged. There have been countless times where I have come out of a disabled toilet because I’ve had no other option and had the comment, “you shouldn’t be using that.”
‘I now carry a “Can’t Wait” card and RADAR key from the Crohns & Colitis UK Charity, which gives me access to public and disabled toilets and at least have something to show to people, should they question me.’
Gary also works as a trustee for PSC Support, a UK-based charity to help people with the condition. He says that the team and other members have been a huge support for him throughout his journey.
He explains: ‘We manage a support group on Facebook of over 2,000 members who have PSC. The group is invaluable in the support and wellbeing of our members.
‘We also hold regular PSC Support information days where patients and family members can come along and listen to doctors and other patient stories.’
He wants to see more support for people with invisible illnesses to use facilities without being judged.
He adds: ‘Many people with PSC aren’t classed as ‘disabled’ and therefore not eligible for a traditional blue badge, yet in many instances, the fatigue from the condition can be debilitating.
‘Not only that, the overlap with UC/IBD means there can be an urgency to get to a toilet. I think there needs to be more done to provide sufferers of ‘invisible illnesses’ with medical cards, or something similar.
‘The worst scenario for me has been pulling into a service station which didn’t have a loo and having to basically beg the attendant to use their staff toilet, which is extremely embarrassing. If there was a nationally recognised scheme, similar to the card I have from Crohns & Colitis UK, this could potentially make things easy, without the need to necessarily apply for a blue badge.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected].
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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