Kate and her family have been through a tough couple of years as her son was diagnosed with three serious conditions in succession. Here she shares her story and explains how she copes with the stresses her situation brings.
Our son Max was 12 when he was diagnosed with autoimmune hepatitis. It came as a huge shock to us and to him. From noticing him having yellowing of the eyes to suddenly being a very sick child was so rapid and just something we found so hard to digest. It turned life as we know it upside down and when you first get a diagnosis like this there are so many ifs, buts and maybes that make your mind spiral into some really dark places. Max had obviously been ill for a while and we hadn’t realised. When we look back now you could see the possible signs that he was unwell. But the symptoms were so subtle that we or a GP would probably have not worried about them. Both my husband and I have struggled with the guilt and regrets of not knowing and not getting him help earlier. Hindsight is great thing and we both struggled with the idea that if we’d known what this was earlier, maybe Max wouldn’t have been so sick. As parents, the rollercoaster of emotions is a brutal journey to ride.
Within a month of this diagnosis, Max was also diagnosed with primary sclerosing cholangitis Another really serious condition which felt like another huge blow. There seemed to be nothing positive in this whole process and trying to keep a child newly diagnosed with these conditions happy and optimistic was extremely challenging. You are battling with your own fears, sadness, anger and ‘why us?’ and then trying to balance being hopeful and uplifting to your child who is going through it all.
It took a long time to get Max stable with his liver condition. It was tough getting the phone calls that Max needed more and more medication. Your mind runs wild with you and you develop a permanent anxious knot in your tummy that doesn’t go away. He suffered with massive weight gain and severe acne from the steroids which really affected his mental wellbeing. When he returned to school he was taunted about being off for so long. Other kids just made up reasons why he’d been off – brain tumours, transplant, heart attack – and those that had limited knowledge said he’d been an alcoholic or had a drug problem. He never corrected anyone or shared why he’d been off but he knew he was carrying the stigma of liver disease. Sending him to school felt like sending him to the lion’s den but he was able to remain strong and appear to wash off the comments and jibes. At home though he would be upset by it and it was heartbreaking to think my then 13 year old was having to put on the fight of his life both medically, socially and emotionally.
Max with his sister, Eve
Shortly after receiving the first two diagnoses, Max starting experiencing bowel problems and it took us a further eighteen months to get a diagnosis of IBD. This was a very arduous and stressful journey, begging hospitals for appointments to get Max some help. Without pushy parents this system would fail these children enormously. He was finally diagnosed in October 2023 and was immediately put on medication. While as parents we were relieved to get an answer, I would say that for Max this diagnosis was the hardest and he has struggled since to come to terms with it. It has really affected his moods and emotional state, he’s either hyper or incredibly low. It has affected his school work and is starting to affect his social circles to. So, although for the first time since diagnosis his liver, bile ducts and IBD are stable, he is really suffering with his mental well being. With the support he has been offered and pulling together as a family I know that Max will be able to find his strong, determined and humorous self again. For all of us this is a journey and a process and we always try to live for the day we are in and be grateful for each new milestone reached.
How running helps
I have run on and off since I was a student and as I’m now 47 that’s a long time. I always used to run alone and couldn’t think of anything worse than talking whilst trying to run. But when one of my best friends lost her husband three years ago and she wanted to join a running club which had a walking group, I joined with her and we discovered that we loved the social aspect, the camaraderie, and the new friends we had made on the way. So I convinced my friend to do Couch to 5K so we could join one of the running groups. She did and we learned how to chat while running and that was the turning point for me. I now run with the club twice a week but I also still take time out to run alone. Running alone is my release from the week’s stresses and strains. I feel a physical weight lifted from my shoulders when I run alone. When things are particularly tough, I find pushing my body to limits helps to me keeps me calm, stay rational and make better decisions.
I always try to have a race planned each month. This means I never stop the training routine. I find having something to strive for that is for myself helps my mental health. So yes sometimes when that 6am alarm goes off, it’s easy to roll over, but knowing I’m doing this for Max and I’ve a race to train for gets me out of bed. I run three to four times a week and then use the gym and swim to cross train my body to avoid any injuries.
Running to fundraise for CLDF is an obvious choice. The charity initially helped us immediately after diagnosis with leaflets which gave us some explanation of Max’s disease. We have also been offered the chance to meet other families and although Max isn’t at a stage yet where he would feel comfortable doing that, it’s good to know that we’re not alone and that this opportunity is there for the future.
Every parent in this situation has their own way of dealing with stress but all I can say is that running for me is like therapy. The release I feel when I run is like no other. Whether it be sunshine, rain or hail, when I run I feel as though my stresses are being stripped from me and I can think clearly at the end. For the time I’m running I feel free and the knot in my tummy disappears. I’ve always felt a natural affinity to the outdoors and I love to breathe in the fresh air, absorb the sunshine, feel the rain or wind and just be in nature. Everything we’ve been through means that life could feel very negative at the moment but going for a run helps me to find that equilibrium.
