Gemma's Journey: Life as a Single Parent with Multiple Autoimmune Conditions
Gemma is a single mum in her thirties and is living with PSC, AIH, Crohn's and a few other comorbidities.
She kindly shares her experiences from diagnosis to symptom management, mental health challenges and the unexpected realities of life with chronic illness.
My name is Gem, I am in my thirties, from the South East and a solo parent. I have worked in Childcare and Education since leaving secondary school. I have a passion for understanding more about the world, this led to my undergrad in Global History and Identity and then onto a Post Grad in Education. Since 2018, I have been working as teacher specialising in Early Years and Child Development.
I've written a bit about my experience of living with multiple autoimmune conditions, primary sclerosing cholangitis (PSC) and autoimmune hepatitis (AIH), Crohn’s disease and a few other comorbidities.
Diagnosis
My journey to a diagnosis was not straightforward, as I understand is common with PSC. I was diagnosed with Crohn’s in 2018 after a few years of feeling unwell. The warning signs for PSC were there, and they were missed for years. My liver function test results were raised for over a year and a half, my GP later disclosed! The symptoms and raised LFTs were put down to the infusions I was on to treat Crohn’s disease.
Then almost out of nowhere in April 2021 I developed severe fatigue, itching and yellowing of the skin. After 3 trips to A&E in 5 days and being sent away with ‘possible’ gallstones, my body started to shut down. I became very unwell; upon admission I was told that my liver was in a bad way.
I couldn’t keep water down let alone food, the first few days are still a bit of a blur. I was put onto the highest dose of steroid infusions, which led to psychosis which was terrifying. Unfortunately, my body doesn’t react well to many medications, which now makes management of symptoms even trickier.
I had multiple MRI, MRCP, CT, ultrasound scans and a liver biopsy. That is when I was diagnosed with PSC and AIH overlap. I do count myself very lucky to be under the care of one of the leading experts on PSC, she has made the whole process much more bearable.
After Initial Diagnosis
After my initial diagnosis, I had some small cholangitis attacks, but nothing that wasn’t resolved within a month or so. In February 2023, I was admitted with biliary sepsis and cholangitis attack, I was in hospital for weeks.
When I was finally discharged, it took me around 5 months to recover. I lost the ability to move properly, I couldn’t raise my arms or legs properly and I was in constant excruciating pain for weeks. My body was still fighting to survive each day.
Eventually, I was well enough to return to work for a few hours per week. I remember scoffing when they suggested 1-2 hours per day, but it was more than enough, I was still sleeping around 18+ hours per day. My ability then and now to fall asleep in restaurants, the staffroom at work and other obscure places is comical.
One year after diagnosis
A year later to the week, in February 2024 I started to notice more symptoms again. A few weeks later, things took a turn, I was feeling very unwell.
Given that it is a rare disease, few medical professionals I encounter have even heard of PSC. Explaining myself over and over and being gaslit is par for the course these days.
I was turned away from hospital with no answers or plan. I went back the following day as I knew I was very unwell. Sure enough, I was blue lighted to my hospital with biliary sepsis for the second time in a year. Further fibro scans, PET scan, MRI and a very complicated liver biopsy confirmed cirrhosis in July 2024.
I am now under the care of my consultant as well as another consultant at King’s College Hospital. We have started the serious conversations about transplantation.
All these experiences have taught me to advocate for myself and not be brushed off when attending A&E or with dismissive medical professionals. I have used the PSC Alert card a few times with various success, again advocate for yourself!
Reality of life with chronic illness
My stats for the last 12 months:
- Overall Hospital trips 78 including
- A&E: 26 times
- 19+ nights as an inpatient
- 116 vials of blood taken. 2 liver biopsies
- 1 PET scan
- 6 ultrasound scan
- 5 MRIs
- 3 CT scans
- 5 X-rays
- up to 6 different medications taken per day (flare dependent).
- Too many doctor and consultant appointments to count! I am incredibly thankful and indebted to the NHS.
How my conditions affect me every day:
- Fatigue is typically my biggest barrier and I suffer a lot with this
- Abdominal and joint pain
- Hypoglycaemia as my liver cannot always regulate the sugars in my body
- Itching skin (mainly at night)
- Brain fog
- Depression and anxiety (panic attacks)
Looking back now, I did not process my diagnosis at all and tried to continue as ‘normal’. I remember thinking how I could have liver disease, I don’t even drink alcohol. This is a huge misconception; liver diseases are not always alcohol related and the stigma around it still is appalling. It is certainly something post-diagnosis that I get cross about, people assuming I have somehow done this to myself, that it is my fault as soon as I mention I have liver disease.
Getting PSC has totally changed my life and where I thought I was heading. I have had to all but give up my aspirations and goals I worked so hard to achieve in my career. I worked my way up to Head of my department and within a year I was too poorly to maintain that role. I am only able to work part time (2 days) now. I am very thankful to my work for offering support in re-arranging and revising my role multiple times. Also, my colleagues as many have gone above and beyond to support me and my daughter over the last few years. I realise that currently I am very lucky that I am in a survivable financial position. Citizen’s Advice and my GP provided many signposts to charities and government support available.
I am still very much adjusting to what a ‘successful day’ now looks like for me. I have ‘good’ and ‘not so good’ days. Some days I am unable to get out of bed, drive, leave the house, care for my daughter, move more than a few steps, hold my phone, stay awake for an hour or so at a time. Other days I can get out for a walk, go to work, exercise, keep plans I have made, go out and see or experience new things. I am the first to admit even before getting diagnosed I have suffered with my mental health. I was diagnosed with PTSD late last year and I have on-going weekly therapy sessions to help me come to terms with everything. It took a few years to be ready to, but seeking professional help was one of the scariest but most important things I could have done for myself. I have always been a fiercely independent and self-reliant person.
Since getting sick, I have had to rely on my support network of friends and family who have really helped me. The mum guilt I feel for my daughter’s unconventional childhood is huge, she is now in the young carers programme. She receives support in managing how my diseases affect her and gets to go on days out where she can just be a child with no worries for a while.
I think a universal sticking point for someone with a chronic illness is the guilt and sense of burden you feel every day. I often hear people say, ‘you’re so strong’. Truth is, I really am not. I had two options: ‘be strong’ or give up. I know now that progress is not linear and I will continually have to change my goal posts. However, I am now building the foundations and strategies in therapy for when that time comes. I draw strength and advice from the brilliant community on social media of others with the same conditions.
Hearing other people going through the same thing or offering advice from personal experience is really comforting. I take advice from PSC Support, British Liver Trust and Crohn’s and Colitis UK; they are great for current research and practical advice. My diagnosis has really put life into perspective, and I certainly have a different outlook than before. I am now that insufferable friend that educates them about organ donation and tells everyone ‘Health is wealth, we take it for granted until its gone’.
The future hold what it holds, I cannot change that, I just continue to take each day as it comes.
Thank you Gemma for sharing your story.
