It might be my 40th birthday coming up next year, but I can still remember like it was yesterday what it was like having MS as a teenager. For background, I had my first identified difficulty at the age of 13 (optic neuritis) and was then diagnosed at age 15, after a couple of weeks of my legs refusing to work.
I think I was lucky – the fact that my father was a GP and my mother a physiotherapist meant that as soon as they realised that something ‘not quite normal’ was going on with me, I was hotfooted to the nearest large hospital, where I was diagnosed with Relapsing Remitting MS.
MS is so much a part of me now that I can’t quite believe that it was 25 years ago that I first heard the words ‘Multiple Sclerosis ‘ in relation to myself. At that time, aged 15, I knew very, very little about the disease. I think I’d vaguely heard of it once as a child, when a man in a wheelchair came to visit my school on a ‘disability awareness day’. Seeing my normally very composed parents being visually upset whilst telling me that I had this new diagnosis made me realise just how significant it was. Now that I’m a parent myself, I can see how hard it must have been for my parents at that time.
This all happened in early 1994, when Disease Modifying Drugs (DMDs) were in their infancy. I was not offered any medication, despite having several ‘relapses’ (episodes of symptoms, e.g. numb legs, lasting for a period of time before then resolving again) within the two years post diagnosis. Now I know that the push is for early treatment, to try and reduce the damage that can build up in the nervous system, I find it very frustrating, but at the time I liked not having to take any medication – as taking it would mean that I was definitely ‘sick’.
And that’s the thing – apart from the times when I did have a clinical relapse, I didn’t feel sick. I was provided with loads of information from the hospital and my parents also wrote to the MS Society for leaflets and publications, but I just didn’t associate myself with the people that they were talking about. It said that most people with MS were in their 20s and 30s, I was 15. They talked about how it can impact on people’s ability to work, but I was at school. There was a local support group, but I didn’t fit in with the older people with mobility impairments. I didn’t change what I ate, the amount of exercise I was doing or even the amount of socialising that I did, because I was so determined that it wasn’t going to impact on my life. But MS did impact on my life. Looking back now, I was in a bit of denial. I remember my parents telling me to rest instead of going to my friend’s house when my leg was numb and I walked with a strange gait. But apart my leg looking funny when I walked, I didn’t feel different, so I just kept going.
Despite my denial/lack of understanding about the disease, it did lead to me having to make changes in my life that I otherwise wouldn’t have, had it not been for the MS diagnosis. These included:
- Not always going out with my friends because of intermittent mobility difficulties and difficulties with fatigue
- Having to take time off of school to attend medical appointments
- Going through embarrassing medical situations, for example learning how to self-catheterise with an MS nurse showing me, when I had difficulties with my waterworks
- Having to wear a leg brace to help stabilise my leg and foot
- Having regular meetings with teachers and the deputy head at school to talk about things that I might need to have to help me at school, for example extra time during exams
- Having awkward conversations with friends about my diagnosis and having to go through the process of deciding who and who not to tell – it felt like a big secret that people wouldn’t understand
And I was aware that I was different to other people. I might have been somewhat in denial, but I did know that my lovely sister was upset about my diagnosis and that she had a need to chat to others about it. I hated the fact that she had to do that and the fact that I had to adapt and change what I wanted to do at a time when I should have just be able to enjoy and take part in life without any restrictions.
Ultimately, though, I got through it. And I can honestly say being diagnosed with MS as a teenager is, okay not one of the best things that has ever happened to me – believe me I would do anything to not have MS – but is one of the most important and significant things to ever happen to me, that’s made me who I am today. And I like who I am today; I feel that it is made me stronger inside, less likely to put up with things that aren’t right and I am a compassionate and understanding person. I like to think that I would have been all of these anyway, even if I didn’t have MS, but I am sure that it has molded me as a person.
I was having a look at some information from the MS Society about children and young people with multiple sclerosis and read the really interesting statistic that 5 to 10% of people with MS experienced their first symptoms before the age of 16. It makes me wonder how many of those 5% are actually diagnosed within a couple of years of their first symptoms – I would guess not very many. The MS Trust states that an increasing number of under 18s are diagnosed with MS every year – it is felt that improving MRI scans and increased awareness accounts for this. Research shows that children with MS tend to have a slower progression of the disease but that they may become disabled at an earlier age than people diagnosed later in life. The MS Trust states that about half of all children with MS will have anxiety or depression and three quarters of all children with MS will suffer from fatigue. Children with MS are now often offered the DMD’s that may not be licensed for children, but that may still be useful, with careful monitoring.
One thing that I can definitely state is how brilliant my school were in regards to learning about my diagnosis and offering me support. Children with MS will often find that their time at school can be impacted upon by:
- ‘invisible’ symptoms – symptoms that are very real but not easily seen by others – such as numbness, bladder problems, fatigue, mental health difficulties
- difficulty with exams – requiring extra time, the use of a scribe etc
- medical appointments and attendance for treatment
- time off due to relapses or symptoms
I was offered extra time during exams (which I did not need to have in the end) and just knowing that I had people that I could approach at school made a huge difference. I didn’t feel guilty for missing class and I was never made to feel guilty by school staff. In fact, they treated me just like any other kid, just with the added understanding that things might be tricky for me.
So what advice would I give to my younger self? It is a difficult one, because sometimes I think that my ‘denial’ about the diagnosis helped me to lead as fulfilling a life as I could as a teenager. Yes, adaptations had to be made, but I could still do everything that I wanted to, on the whole. I would say that there may be some tough times ahead, but there will also be brilliant, memory making times. MS will make you stronger, more compassionate and make you realise who your true friends are. I would say that you could still do everything that you want to do and I would advise that it would be worth reading up about diet and exercise to give yourself the best chance to stay as healthy as possible. I would advise reading up about DMDs and discuss it with my neurologist more (or have my parents do it). And, finally, I would advise seeking out others with MS, particularly other young people with MS – luckily for children diagnosed now, there is a wealth of information and support around that wasn’t there when I was a child. The charity, Shift MS, for example, allows you to search out other people diagnosed with MS by age and location.
I have lived with MS for much longer than I ever lived without it. I am still working (albeit having to make some adaptations) and I have a husband and family that I wouldn’t change for the world. I have two degrees, have jumped out of an aeroplane from 15,000 feet and have visited faraway places. MS doesn’t have to be all negative – I really hope that all younger people diagnosed with MS now take the opportunity to keep going, keep fighting and, well, just keep living.