Hello, my name is Jess and I’m a childhood stroke survivor

How it affected me and how I coped

The first couple of years after my stroke (I was ten) was the hardest time. I needed to rebuild my life, and to discover my needs and my new disabilities.

There were many healthcare professionals who explained and described different aspects of my stroke to me and my parents. It takes real skills to explain to a child what has happened and I want to thank everyone who looked after me. They made sure I understood what they were communicating and, if I didn’t understand, they explained again in different ways.

I needed to improve my aphasia so that I could make choices and make sure that my voice was heard when we were discussing my various medical conditions. The stroke further damaged my heart and I permanently lost the use of my right arm. So I needed to improve my affected mobility and work on improving my mental health. What motivated me was my family, and desperately wanting to go back to school.

Jess, stroke survivor

It was very hard for me to keep and make friends. Due to my aphasia and my fatigue, it still is. However, it’s a bit easier now compared to the first few years of being a stroke survivor. I have a few friends and many people who care about me.

My life now

The thing that challenges me the most as an adult, is the mental and physical fatigue. Also my aphasia will always be a challenge, but it gets worse when I am mentally fatigued, hence I rest. Some days I need to be at home not doing anything for the day, due to fatigue. But that’s fine. I rest until my mind or body is recharged.

Despite my other medical conditions, as well as my stroke recovery, I do try to make every day fulfilling. Keeping a job didn’t work out for me, so I volunteer at a Youth Club and at a learning disability charity. I have a beautiful dog who loves going out for short walks and having her belly rubbed. I love being with my caring and funny boyfriend and seeing my devoted family. All of those fulfil my life and I’m grateful for that.

What I’d like to say to you

Having a stroke when you are a child or adolescent is the hardest, most difficult time of your life. You are probably feeling alone, trying to figure out all the information about your stroke. It can feel too much, trying to understand all your emotions. It may feel like your head is about to explode.

Jess, stroke survivor

It is also scary because you may feel like you’re the only child or teenager who has had a stroke at a young age. However, you are not. Many children and young adults in the UK are going through a similar recovery. You are not alone.

It is normal to grieve for your old life, but you are still that person, you just need to adjust to your needs and possible disabilities.

If I was giving a message to you, it would be that recovery after stroke can be a slow process. You may get frustrated much more than once, but be patient and don’t be hard on yourself. Your mind and body are working the best they can to recover. When you get mentally and/or physically fatigued you must listen and rest. Your motivation, a good mind-set and a good routine will help.

I will give you one tip to keep and make true friends. Be honest with them and yourself about your stroke. True friends are people who care about you and will stick by you through thick and thin. People who won’t aren’t your friends and are not worth worrying about it.

If the Childhood Stroke Service at the Stroke Association existed when I was a child, it would have helped my parents, my little brother, other close family, and myself tremendously. I just wish that my family had services too, because a stroke doesn’t affect you only, it affects your family and everyone in your life, too.

Now I’m living my new altered life and I’m happy. I know I wouldn’t change my life one bit, past and present.

My message is, you will get there and don’t give up. You are not alone and there is a life after your stroke.

Listen to Jess' story

In this podcast, Jess talks about what life was like after the stroke and her journey through rehabilitation.

Childhood Stroke Support service

Our dedicated Childhood Stroke Support team is here to support you with practical information and emotional support, whenever you need us. The service is free and available across the UK.  

How can I get support?

Understanding stroke as a young person