Building a healthy relationship with exercise after developing an autoimmune disease

Jenny shares how she rebuilt her relationship with exercise after years of hammering her body with little rest. Now she’s helping others to look after themselves.

My relationship with exercise

I’m Jenny, I’m a health and fitness coach and I have my own business. I am married and have two children. My life can be a bit hectic but I love it.

I hated fitness my whole life growing up. I have scoliosis so as a child I had to wear a back brace. It led me to be very self-conscious. I got into exercise before I got married but that was for the wrong reasons. My focus was on losing weight and fitting into my wedding dress. I didn’t necessarily enjoy being active. It was more a means to an end.

It wasn’t until I had my daughter that I started to enjoy exercise. I got really into running. I felt really good about myself, and I loved the buzz I got from it as well as the community. As I got more into it I decided to enter some races. I started with a few 5ks then some 10ks and half marathons. Eventually, I did the Brighton Marathon.

Becoming ill

I ran the marathon and did really well. Suddenly, a week or two later I became very ill. I was rushed to the hospital as my liver stopped working, my spleen was enlarged, and I had fluid around my heart and lungs. Everything was shutting down.

No one could tell me what was wrong. It was a very worrying time.

That summer I was diagnosed with still’s disease, an autoimmune disease. I was in the hospital for ten days two times. It made me really take stock of my life. I was so ill I couldn’t walk. I had to learn everything again. It was very overwhelming. I couldn’t breathe properly and struggled to walk the kids to school or play with them.

You don’t realise how important your health is until it’s taken from you. For years I took my body for granted. I hammered it. Constantly doing loads of exercise without the right nutrition and rest.

Getting back to being active with an autoimmune disease

It was very hard to be active again after being so ill. Still’s is a really rare illness, it’s an autoimmune disease teamed with arthritis. I struggle with my joints and muscles and get exhausted easily. The only way to keep on top of it is to make sure I stay active and keep building my muscle and joint strength. Using weights helps build my bone density but it was hard to get started again.

It wasn’t just physically hard but also very mentally challenging. It took a really long time to rebuild my confidence and know I could do things. At first, I feared I would pass out or my legs would go from under me. My muscles were very weak, I had spent a long time in hospital stuck in bed.

I had to start small. Just getting back to walking the kids to school was a massive achievement for me. After just walking for a couple of months I started doing a few lightweight sessions. I reeducated myself on what I should be putting into my body and when I should take rest. In the past, I had overtrained so much that I didn’t know the value of rest days. It was a big learning curve for me.

I spent a lot of time crying during the process. I was just so upset at what had happened. It’s like a grieving process, coming to terms with what has happened to you.

Deciding to help others

Throughout the whole time, I found it hard to have support specifically for my disease. Luckily I had great friends and family around me who would check in on me. But sometimes they struggle to remember I need to rest because I look ok on the outside.

I’ve tried to find people with the same condition but it’s one in 500,000 people. I have met a few through social media and have seen what they do and got support that way.

When we went into lockdown in 2020, it made me take stock of my life again. I realized I wanted to help other people and do more with my life. I wanted to focus on my health and help others with theirs. The best way to do this was for me to become a personal trainer. That way I could help educate others to look after themselves and stop a repeat of what had happened to me.

I wanted to focus on the body as a whole and help others rehabilitate.

Personal training and managing my condition

It can sometimes be hard working in activity with my condition, but I have learnt to manage it well. Energy is something I sometimes struggle with. I get exhausted so I make sure to take time out to rest throughout the day. I don’t do back-to-back classes or clients. If I did, I would be in bed wiped out by 7 pm.

Instead, I try to have a sit down to reenergize frequently, breaking up my work throughout the week. I guess you just learn to live a little differently. A bit more balanced. I’m the type of person who goes 100 miles an hour and I don’t know when to stop so now I have to listen to my body, it makes me stop. I have to listen when it tells me to rest.

Advice for others living with a health condition

When you get diagnosed with a condition or illness, I think you have to remember that it’s ok. You can have the confidence to get back up again. You don’t have to give up and it’s not the end of the road. Just take it one thing at a time. Set tiny goals each day and move forward, one small step at a time.