Katie's story: My mum was diagnosed with MS when I was 14

Being a teenager can come with lots of challenges, not least when you have a parent who has been diagnosed with multiple sclerosis. Here, Katie talks about what it was like to receive the news that her mum had MS when she was 14 and why she’s chosen to talk about the condition for her university project. 

My name is Katie Morgan. I'm currently a student in Salford studying journalism and my mum has MS. She was diagnosed about seven years ago, when I was 14, although they think she's had it for a lot longer. 

At first I didn't know what MS was. It wasn’t something that I'd ever heard of before. I remember my mum went completely numb down her left side and thought she was having a heart attack and was going to die. She went to the hospital where they did a brain scan and then about a week or so later, they told her she had got MS. 

My mum discussed her diagnosis with us (me, my younger sister and our grandparents) straightaway, because she hadn’t been feeling her best for a while and we were all really worried. When she tried to explain MS to me, it did take quite a few years to get my head around. As a 14-year-old, that did add an extra layer of worry to my teenage years, especially because I didn’t understand it. I had lots of questions like, ‘What is MS?’ ‘Is it like a long term illness?’ and ‘Is this something that could be sorted?’ 

Since then, I’ve done more research and spoken to other people about it, including people my age with MS, so I’ve been able to learn more. The more I’ve looked into MS, the more grateful I am for the progression there has been in terms of treatment and support over time.

My mum and I are really close. Even though I’m away at university, we talk multiple times a day and always text each other in the morning. Whenever I can, I go home, and we just spend all of our time together. I love her. When I was younger, we weren't as close but then around the time she was diagnosed with MS we became a lot closer. I'm not sure if that was anything to do with it or if I was just reaching an age where I was starting to get close to my mum. 

We’re quite lucky, because my mum’s MS is quite mild, it doesn't seem to affect a lot that she does. Sometimes we might make plans but then she could take a turn within a space of a few hours and be really exhausted, have a bad flare or not feel like going out. I'm fine with that though as it has been the norm for so long that it doesn't really affect me much. I'd rather she just keep herself as well as she can. I was diagnosed with Fibromyalgia three years ago as well so I feel like that’s made me more understanding. In a way, we can relate to each other because we sometimes have similar symptoms and know what it’s like to have flare ups. 

Now I’m at university, I’m doing my final major project on the subject of MS. I want to address some of the misconceptions and show that if you are diagnosed with MS, it doesn’t have to be the be all and end all of your life. I know that my mum has been quite lucky and there are other people that haven't been as lucky but I also know people that are doing better than she is. MS can be complicated to understand and is completely different for everybody so I'm hoping to speak to a big range of people, including some professionals, so that I can help others further understand the condition and learn more myself as well. 

For anyone whose parent has recently been diagnosed with MS, I'd say to be there for them all you can, but also remember to be there for yourself. It's not only going to impact their life, but it's going to really impact yours as well, especially if you're quite young, when you find out like me, when I was 14. 

Ask lots of questions so that you can learn but remember that you’re allowed to have days where feel lots of different emotions. It's okay to take a while to process it, because I think I'm still processing my  mum’s diagnosis and it's been seven years. As long as you're there for them and you try to educate yourself via trustworthy sources, then I think that's the best thing you can do.

• MSTV - YouTube channel for young people affected by MS
• Talking with your kids about MS - Our free publication helps parents talk about MS
• Young person’s guide to MS - A resource for 10 to 16 year olds who have a parent with MS
• Kids’ guide to MS - Our book for 6 to 10 year olds who have a parent with MS