MS organisations globally raise visibility of invisible symptoms on World MS Day 2019
To mark the 10th anniversary of World MS Day 2019, this year’s campaign ‘My Invisible MS’ (#MyInvisibleMS) focuses on the idea of visibility, raising awareness of the invisible symptoms of MS and its unseen impact on people’s quality of life.
One of the most common neurological disorders and causes of disability in young adults, there are 2.3 million people living multiple sclerosis (MS) worldwide, with likely hundreds of thousands more living lives undiagnosed with MS.
The cause of MS not yet known and no cure is yet available, though there are treatments available that can help some forms of MS, with most people with MS diagnosed between the ages of 25 and 31 and around twice as many women diagnosed than men.
With no set pattern to the severity of someone’s MS and the course it takes, many people living with MS experience symptoms that those around them don’t see.
This lack of visibility or awareness of unseen symptoms can be the cause of great frustration for those living with MS and the impact it can have on their quality of life, according to the MS International Federation (MSIF).
Highlighting that MS is unique, with each person experiencing it in different ways, MS organisations worldwide are calling on the public to learn more about the invisible symptoms of MS, with people affected by MS sharing their #MyInvisibleMS stories on social media today.
Peer Baneke, CEO of MS International Federation, commented: “This year, on World MS Day, the international MS community is urging people to think twice about those they pass in the street, and think about those who may be experiencing the challenges of MS without overt, obvious symptoms.
“We’re aiming to shine a spotlight on the invisible symptoms of MS and encourage people around the world to speak out about theirs. MS is different for everyone.”
Some of the most common invisible MS symptoms include brain fog, fatigue, pain, muscle spasms, dizziness, heat sensitivity, depression – as well as mobility, sight and even swallowing issues.
Discussing the negative reactions received from passers-by who don’t see her MS symptoms and therefore don’t believe her to be a ‘valid’ wheelchair user, Smitha Sadasivan, 38, a disability rights activist, consultant to the Election Commission of India, shared her #MyInvisibleMS story.
“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. I cannot stand for a long time, but neither can I sit for a long time. 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. 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.”
Launched in 2009 and centring on a different theme each year, World MS Day is officially held on the 30th May annually, bringing the global multiple sclerosis (MS) community together to share stories, raise awareness and campaign with and for those living with MS.
MSIF provides a toolkit of free resources to help everyone to take part in World MS Day and help create positive change in the lives of those globally living with MS.
The campaign video can be watched below: