Ally Gordon can attest to the fact that no two chronic illness diagnoses are alike. Before she was diagnosed with Primary Sclerosing Cholangitis (PSC) in 2020, Ally was diagnosed with Crohn’s disease, Ulcerative Colitis, and Autoimmune Hepatitis.
“PSC was a little scarier than my other diagnoses because it felt like there was nothing I could do to control it. With Crohn’s and Colitis, there’s medication, you can get a bag – but when I first found out that I had PSC, I was told I couldn’t do this or that so it became, well, what can I do?” she said. “My specialist told me, ‘Within the next 2-10 years, you’re going to need a liver transplant.’ That was pretty overwhelming.”
For the first seventeen years of her life Ally, now 27-years-old, trained as a competitive swimmer; from 2013-2017, she represented her home country of New Zealand in international competition. So, when she describes PSC as overwhelming, you know she isn’t exaggerating.
The Domino Effect
“I get liver pain pretty much every day, but my worst symptom is the domino effect,” she said. “When I’m having a PSC flare up, everything else starts to flare up, too, and because my liver isn’t helping to break anything down during a flare up, I can’t even take any meds because I can’t absorb them.”
The primary pain-relieving treatment available to Ally is an Endoscopic Retrograde Cholangiopancreatography (ERCP), a procedure that includes opening up clogged bile ducts in her liver. Still, on days where her liver pain is debilitating, it truly changes everything.
“When I have my liver pain, I can’t get out of bed. I can’t breathe or yawn because taking a deep breath pushes my lungs against my liver,” she said. “It’s a big battle within myself: do I rest and listen to my body? Or do I do something for my mental health that requires me to get out of bed?”
As this pain can come on without warning, Ally has a go-to list of activities that bring her peace: walking her dog, gardening, making art, doing puzzles, or writing her blog. If all else fails, she turns to her comfort shows, Modern Family and Gossip Girl.
“The biggest thing when you’re unwell is not having control over your own body, is not knowing what’s going to happen next,” she said. “I’m anxious all the time because I don’t know what kind of day I’m going to have and because I have no control over that. It helps to watch something where I know what’s going to happen next, so my brain thinks I have some control.”
The Positive Path Forward
Before her diagnoses, Ally was studying to become a nurse. Although she’s set that particular goal aside, she’s currently working to become a patient and family advocate for children with chronic illnesses. Her own care team has played a pivotal role in both her professional goals and her health.
“My specialist has been with me for ten years, and we’ve built the most amazing team,” she said. “With my mental health, it’s been super hard; there have been suicide attempts because I feel so alone. But whenever I go to an appointment, they ask, ‘How’s your health?’ and they also ask, ‘How’s your mental health? What can we do?’ You just will not find that many people who care this much about their patients.”
Outside of the hospital, her partner, parents, birth mother, and friends form the rest of Ally’s unbreakable support system. Today, she’s proud of the positive outlook that she’s been able to cultivate with their support.
“This is the first year that I’ve really felt that I’ve turned it around,” she said. “It’s really taken ten years, but I believe that I’ve got to be positive about this because it is my life now. I didn’t know anyone who was sick when I first got sick. Now I know that, no matter what life throws at you, it does get better and you can get through it.”
“When people message me, they’ll ask how I'm so positive. The truth is that I literally wake up and treat each day like it’s a new day,” she said. “Of course, there are hard times, but it’s worth it. It’s been worth the fight to get to where I am now, and I want to be there for someone who is struggling to fight past that point of ‘What’s the point? I’m sick for the rest of my life.’ I want to be that person for others.”