Growing Up with Multiple Sclerosis

I was diagnosed with Multiple Sclerosis (MS) when I was just 15 years old, after a couple of years of odd symptoms (vision difficulties and a numb left leg) and an MRI scan. At the time, I don’t think I truly realised what a life-changing diagnosis it would be. Perhaps due to naivety or just a refusal to consider the worst, the first few years after diagnosis were spent just getting on with it. I didn’t make any effort to change or adapt my lifestyle to help myself or to connect with other young MSers like me. If I didn’t think about it, it wasn’t a big problem, was it?

Multiple Sclerosis is a chronic, degenerative disease of the central nervous system. Over time, your brain and spinal cord are damaged through ‘lesions’ (like scars) that make it difficult for signals to get through. This means that both motor and sensory serves can be affected, in any part of the body. In addition, those of us with MS often have fatigue and cognitive symptoms (such as difficulties with memory or word-finding).

Growing Up with Multiple Sclerosis

Back in 1994, when I was diagnosed, I was a happy, carefree teenager. I thought about my school work, boys, seeing my friends, music, boys, parties and, er, boys. Typical teenage girl stuff, I guess. But as much as I refused to let my MS diagnosis change me, it did change me.

Suddenly, I couldn’t go out every Friday because, if I was having a relapse or flare, I couldn’t walk. At school, I couldn’t play basketball because I couldn’t see the basket. I was often missing school, due to travelling back and forth to a city two hours away to see a Neurologist. I also had problems with my ‘waterworks’, which meant that I needed to see a specialist nurse to learn how to self-catheterise. Of course, I didn’t talk to my friends about it – what other 15-year old girls would understand?

Looking Back on an Invisible Illness

It is only in hindsight, as an almost 40-year old woman with two children of her own, that I can see just how much my MS diagnosis at such a young age really made me grow up. Ok, so I didn’t quite have the impetus to make significant changes to my lifestyle, as I have as an adult. But I did become much more aware of the difficulties that others face and the existence of invisible disabilities – I suddenly had one!

Anyone looking at me, when I didn’t have obvious physical symptoms, would have no idea about my diagnosis. I didn’t talk about it, except to doctors or nurses on a need to know basis. Of course, not talking meant that I was dealing with this life-changing diagnosis by myself. My parents and siblings were always there when I needed them, but I didn’t want to burden them. I hated being a source of worry to my parents. I tend to think that, because I didn’t want to burden anyone with my issues, I almost didn’t burden myself. It was almost like I was denial. But I know now that if I had taken the time to talk to someone or research Multiple Sclerosis and what could potentially help, I could have had a very different outcome than I do today.

Multiple Sclerosis As An Adult

I have now moved on to Secondary Progressive MS (SPMS), where you get fewer flares and more progressive disability. Spending so long ‘in denial’ made my move to SPMS almost like being diagnosed all over again. I’m dealing with the grief of the ‘old’ me and thinking about ‘what ifs’. I know that there has been research over the past 50 years which has looked at how making positive changes to your diet and lifestyle can put you in the best possible position for fighting MS. I sometimes kick myself for not looking into this sooner. But was I truly ready when I was a teen? I’m not sure. And I don’t think that it is helpful always regretting what you could have done.

Advice For Teens With Chronic Illness

If I could give any advice to other teenagers diagnosed with MS, or any other chronic illness for that matter, it would be this:

• Don’t be afraid to talk to others. Social media is now around. You can connect with others around the world who are going through the same things as you.
• Take your health into your own hands. Research what may help. Don’t be afraid to ask for what you need or to make the lifestyle changes that will help you.
• Enjoy life. Despite my MS, I have travelled, had children, and built a career. I am always finding new pleasures every day.

Life doesn’t stop because of a chronic illness diagnosis; it just adds a curve to the road that you will be able to pass.

About the Author:

Jenny is a married mother of two who was diagnosed with Multiple Sclerosis as a teenager. She enjoys blogging about her life living with MS on trippingthroughtreacle.com, where she shares her day-to-day life, information, healthy recipes and parenting tips.