Today (30 May) is World MS Day, where a global connection of people are coming together to reveal their life and experiences of multiple sclerosis (MS). This year’s theme will focus on raising awareness of the invisible symptoms of MS and the impacts on daily life.
In the UK alone, there are an estimated 100,000 people living with a form of MS.
The lifelong condition affects people in different ways, with symptoms including: mobility and speech, but the invisible symptoms can be more debilitating.
Fatigue, pain, bladder issues, vision problems ae just some of the invisible symptoms that are associated with MS. Today is a time to focus on the invisible side of living with MS.
The #MyInvisibleMS campaign looks set to promote increased understanding of invisible MS conditions, with many people coming forward to share their experiences.
With 2.3 million people living with MS worldwide, today marks a celebration to not let MS hold anyone back – alongside raising awareness through campaigns taking place in over 100 countries.
One country includes India, where Smitha Sadasivan works to promote disability awareness.
Smitha is a disability rights activist and consultant to the Election Commission of India, through her powerful work, Smitha has faced negativity or judgement from the wider community due to the invisible symptoms she experiences from MS.
“I push my wheelchair around, and occasionally sit in it. People say ‘oh you can walk, so why are you using the wheelchair, why are you sitting in the wheelchair?’. What they can’t see is I get too tired to walk for too long, and I need something to hold on to when I walk,” explains Smitha.
“I cannot stand for a long time, but neither can I sit for a long time,” Smitha continues.
“People see you raise a hand, or stand but don’t think about how many times you can raise your hand, how long you can stand for. I also have fluctuations in vision. I have bladder urgency – then the wheelchair gets me to the toilet fast.
“My bones are brittle. My muscles are weak. I’m more prone to infection. My brain slows down because of the lesions and the medication. I need people to understand I can respond, I just need more time than other people. My stamina level can fluctuate throughout the day.”
Smitha shares: “I cannot say in advance I can do something. Some days I might have the energy to go to the park, other days I do not. Every day is new and different. This is the reality of the invisible symptoms. The barriers are physical, cognitive, sensory and emotional – I’m calling on people to understand MS a little more.”
Similarly, MS can have an emotional impact on people.
Evan was initially diagnosed with MS in 2002 – after he had finished completing his Masters at the University of Manchester. Receiving the diagnosis was a shock for Evan, who was only in his twenties when he learned the news.
He remembers: “I experienced denial, followed by – eventually, around ten years later – acceptance of the condition.”
Evan then turned his focus to sport, and is determined not to let his MS get in the way.
“It was at this point, after a move to Dubai, I discovered swimming at first, and then triathlons,” adds Evan.
“I enjoy the everyday workout despite the motion difficulties I face. The swimming and cycling come more naturally, but the running is most difficult for me.
“I do not want to surrender to the obstacle that is MS. I am, quite literally, running with it. During the last few years I have taken part in Ironman Budapest in 2016, Ironman Maastrict Limburg in 2017, the Corinth ‘Swim the Canal’ in 2016, 200km+ cycles and very recently an Olympic distance Ironman at Igoumenitsa, Greece, and the Ironman Greece 2019 at Navarino Bay.”
During World MS Day you too can work to encourage increased appreciation of the impact that invisible symptoms of MS can have on a person.