Posted on August 22nd, 2012
Multiple Sclerosis (MS) is usually diagnosed between the ages of 25 and 31, a time when we are starting our careers, starting a family and making plans for the future. What does it mean to someone, to the way they live their life and their expectations of the future, to be diagnosed with a chronic disease like MS at such a young age?
People who have been diagnosed with MS often say that they feel a stigma attached to having the condition, and often don’t want to tell their friends, colleagues or family about it. Cathy Johns, who is an author and has MS, keeps a blog about the condition and also wrote an article for the Independent about her decision to “come out”. In the article she says,
“After diagnosis I was advised by medical professionals not to rush into telling people about my condition. There is no legal obligation and they have seen many go through difficult situations in the workplace. And it can be challenging to deal with others’ negative reactions and emotions when you are still grappling with yours. I was also told many people in the public eye with MS are not open about it.”
This lack of public understanding perhaps has something to do with the unique way that MS manifests in each person, and the journey that each individual must take. Many of the symptoms of MS are invisible. Most commonly symptoms include fatigue, a loss of feeling and pins and needles in limbs and impaired vision. PwMS often report that others don’t understand the extent of their disability and how it can impact upon their day to day life. A lack of understanding amongst peers and wider society can make living with MS an isolating experience. “The Spoon Theory”, which was written by Christine Miserandino, is an attempt to explain to people not suffering from chronic illness (in her case Lupus) how it actually feels, in more tangible terms.
The uncertainty that MS brings, due to its unpredicatble fluctuating nature makes it difficult to plan not only for the future but for tomorrow too. Taking each day as it comes and relying on the support of those closest to them, PwMS often find that they need to adapt their lifestyle in order to accommodate this unwelcome visitor.
Rachie, who was 23 when she was diagnosed with MS, made a decision not to let it affect her pursuing a career as a barrister. After making adjustments to her life, such as her diet and her exercise regime, she found a way of living with MS,
“With a few tweaks along the way, I got there – in December 2011 I was admitted to the bar.”
Journalist Sian Gwylim discovered that MS can severely hamper participation in the fast-paced nature of modern life, and the desire to get ahead in one’s career at a crucial time. After giving birth to her son and being diagnosed with MS within a short space of time, Sian threw herself back into work in an attempt to prove to herself and her colleagues that the condition would not beat her. Whilst her determination and spirit were admirable, she soon realised that she was going to have to adjust her life in order to continue in the career that she loves.
Young people with MS may also wonder how it is likely to affect potential relationships. The shift.ms website says, ‘As MS is often diagnosed in early adulthood … there will also be a large number of people for whom the diagnosis arrived in the midst of being young, free and single.’ The same considerations about disclosing the condition and how it affects, and may continue to affect a person, is compounded in a romantic scenario when there may be more at stake.
The decision of when to trust someone you care about with the information is a very tricky one for many people. The worry that you will potentially be burdening the people you love can cause many people to feel guilty once they have decided to disclose their diagnosis. Sian Gwylim writes about this,
“I feel guilty that my husband has to put up, not only with me and my (he says) sometimes irrational moods (the cheek!), but he also has to put up with the fact that I don’t know how I am going to be feeling from one day to the next”
Watch Shift MS’ film ‘Gallop’ about relationships with MS.
MS in Children
Although it is rare, MS symptoms can begin during childhood. Children with the condition can find that it affects their ability to learn, as documented by The University of California, San Francisco. Since MS is a neurological condition it can affect brain function and memory, as well as attention span and the ability to reason and process information.
“This is particularly true for younger children who develop active MS before they master educational building blocks, such as mathematics and grammar. These children may be at risk for performing poorly compared with kids who master these subjects before they develop active MS.”
It can also affect handwriting, due to the numbness and pins and needles often symptomatic of the condition, and it can also affect Children’s ability to socialise with their peers, as
“Children with MS may withdraw from peers because they feel different from their schoolmates, depressed or embarrassed, or because of physical symptoms such as fatigue.”
The MSIF Young persons survey
In 2012 not only is the World MS Day theme related to young people, but we are also producing a dedicated MS in Focus with the same thematic content. We want to know more about how MS affects the lives of young people and we need your help. We have a short survey that will help inform our work for 2013, and we would like to invite you to give your perpective on MS and Young People. You can take the survey anonymously and it should take no longer than 5 minutes.
We look forward to hearing about your experiences.
Written by Kirsty Mitchell and Ayesha Ali.