The words below come from Facebook in the PSC Partners Seeking a Cure (Open) Support Group. The member posted this in August 2026 and provided his permission for me to reproduce it on my blog.
Living with PSC: The Illness You Cannot Always See
From the outside, I may look reasonably well.
I can talk, laugh, take care of my children and sometimes do things that make my life appear almost normal. People see me standing, smiling or having a conversation and assume that I must be doing okay.
What they do not see is how much that moment may already be costing me or what happens afterwards.
I live with Primary Sclerosing Cholangitis, or PSC: a rare, chronic and progressive disease that damages the bile ducts and, over time, the liver itself. There is currently no medication that can cure it and no simple treatment that stops its progression. Much of living with PSC means monitoring, waiting, treating complications and trying to stay ahead of a disease that does not follow a predictable course.
PSC is often invisible until suddenly it is not.
When my bilirubin rises, my skin and eyes turn yellow. My urine becomes dark. Other people begin asking whether I am all right, sometimes before I have said anything myself. My face can look tired or drawn, and weight loss can make the illness visible in a way that is difficult to hide.
The itching can become relentless, especially at night. It is not a minor irritation that disappears when I scratch it. It feels as though it comes from underneath my skin, from somewhere I cannot reach. While the rest of the house sleeps, I can lie awake for hours itching, restless and exhausted knowing that the next morning will still come and that four children will still need their father.
There is pain, too: underneath my ribs and across my upper abdomen. Sometimes it is a constant pressure; sometimes it comes in waves or cramps. It can be manageable one day and overwhelming the next. There are periods of nausea, little appetite and weight loss. There is also the kind of exhaustion that sleep does not fix if I manage to sleep at all.
Fatigue is one of the hardest symptoms to explain. It is not simply being tired after a busy day. It is waking up already empty. It is feeling as though my body has used up its energy before the day has even started.
Ordinary tasks become calculations. If I do this now, what will I be unable to do later? If I join my family today, how much will I pay for it tonight or tomorrow?
Sometimes I push through because I want to participate. I want to be a partner and a father, not someone watching family life from the sidelines. I may manage an outing, a birthday or an ordinary afternoon with my children. I may smile, laugh and appear completely present.
People usually see the moment I was there.
They do not see the hours or sometimes days it takes me to recover.
My illness has also meant repeated blood tests, scans, hospital appointments and invasive procedures. I have undergone several ERCPs: procedures in which doctors enter the bile ducts to examine narrowed areas, dilate strictures, take brushings or biopsies and sometimes place stents to improve the flow of bile.
An ERCP may sound routine when it is reduced to a few technical sentences in a medical report. Living through it is different.
There is fasting, sedation or anaesthesia, the procedure itself and the uncertainty about what the doctors will find. Afterwards there can be significant pain and cramping. Because I have experienced pancreatitis in the past, there is always concern about complications. Stents may help, but they can also cause discomfort, increase the risk of infection and mean another procedure to remove or replace them.
Then there is the waiting: waiting for appointments, waiting for procedures, waiting for results and sometimes having to keep asking when something will finally happen all while living with symptoms that do not pause simply because the healthcare system needs more time.
Every investigation brings two conflicting feelings: hope that something treatable will be found, and fear of what else they might discover.
PSC carries an increased risk of bile duct cancer. Atypical cells have previously been found in brushings from my bile ducts. Atypical cells do not automatically mean cancer, but they make every new investigation feel more loaded. A scan, brushing or biopsy never feels like “just another test.” It can feel as though my entire future and the future of my family is hidden inside the result.
The uncertainty is exhausting.
With many illnesses, people imagine a clear path: you become sick, receive treatment and then recover. PSC is not like that. Blood results may deteriorate while I still look relatively normal. A procedure may bring temporary relief, only for the symptoms to return. I can have a better week and begin to believe that perhaps things are stabilising, followed by a sudden increase in pain, itching, jaundice or fatigue.
A better day does not mean I am better.
A bad day does not necessarily mean that something dramatic has happened overnight.
It means I live inside a body whose condition can change without warning.
Medication is another complicated part of my life. Antibiotics may be needed when there is concern about an infection in the bile ducts. Other medication may reduce nausea, ease the itching or help me sleep. Strong painkillers have sometimes been necessary because the pain is real and severe but they bring their own burden.
Pain medication can cause side effects, tolerance and physical dependence. Reducing it is not simply a matter of deciding to take less. Withdrawal can mean restlessness, sweating, diarrhoea, nausea, sleeplessness, anxiety and an increase in pain.
At the same time, needing strong pain relief can lead to judgement. Instead of being seen as someone trying to live with severe chronic pain, I can feel as though I must repeatedly prove that the pain exists.
That is a lonely position to be in: needing medication in order to function, while knowing that the medication itself can also take something from you.
PSC affects far more than my liver. It affects my sleep, concentration, confidence, independence and identity. It influences how I plan each day and how far ahead I dare to look. It changes the way I see my reflection when jaundice, fatigue or weight loss becomes visible.
Mentally, it means living with questions that never completely disappear. How quickly will the disease progress? When will another blockage occur? Is an infection developing? Will I need another ERCP? Will an abnormal result turn out to be cancer? At what point will liver transplantation become necessary?
The possibility of a transplant represents both hope and fear. It may one day save my life, but needing one would mean that my own liver had reached the point where it could no longer carry me. Waiting for that moment without knowing when or how it will arrive is an enormous psychological burden.
I am not living with this disease alone. I am a partner and a father of four children. They give me my strongest reason to continue, but they are also at the centre of my deepest fears.
I worry about becoming a burden. I worry that my partner will gradually be forced to become more of a caregiver than a partner. I worry that my children will remember me mainly as the father who was tired, in pain or in hospital. I worry about the pressure my illness places on the person I love and about all the moments I may have to miss.
There are days when the physical pain is not even the hardest part.
The hardest part is watching life continue around me while my body is telling me to stop. It is wanting to be involved but knowing that determination alone cannot create energy my body no longer has.
And still, life with PSC is not only darkness.
There are better days. There are periods when symptoms ease, when a treatment or procedure helps or when I have enough energy to be genuinely present with my family. There is laughter, love and stubborn determination. I have learned to value ordinary moments because I know how precious they are. A quiet evening, a family outing or simply being able to participate without paying an enormous physical price can feel like a victory.
But resilience should not be confused with being unaffected.
I keep going because I have people I love, not because this is easy. I adapt because I have no other choice, not because I am not suffering. Strength is not the absence of fear, pain or exhaustion. Sometimes strength is simply making it through another night and beginning again the next morning.
What I want people to understand is that the seriousness of my illness cannot be measured by looking at me.
If I smile, I am still ill.
If I laugh, I may still be in pain.
If I join in, I may already know that I will pay for it afterwards.
If I cancel, rest or say that I cannot manage something, it is not laziness or a lack of interest. It is an attempt to protect a body that is already fighting every day.
I do not want pity. I want understanding.
I want people to understand that chronic illness can exist alongside humour, love and moments of happiness. Someone can look calm while feeling terrified. A person can appear strong while being completely exhausted. An invisible illness does not become less real simply because others cannot see it.
This is what living with PSC means for me: trying to remain a partner, a father and a person while carrying pain, uncertainty and exhaustion that most people will never witness.
It means living between hospital appointments and ordinary family life, between hope and fear, between better days and sudden setbacks.
It means not knowing exactly what the future holds, but continuing to move towards it anyway.
PSC may be largely invisible from the outside.
But for me, it is present in almost every part of my life.