MS organisations around the world call on the public to recognise invisible symptoms on World MS Day
Today, on World MS Day, the MS International Federation (MSIF), MS organisations, and the 2.3 million living with multiple sclerosis (MS) worldwide are urging the public to learn more about the invisible symptoms of MS.
People affected by MS across the world are sharing their #MyInvisibleMS stories on social media.
Many people living with MS experience symptoms that those around them don’t see. This can cause great frustration, as it means many people don’t understand the impact MS can have on quality of life.
Some of the most common invisible MS symptoms include brain fog, fatigue, pain, muscle spasms, dizziness, heat sensitivity, depression – plus mobility, sight and swallowing issues.
However, MS is unique and each person will experience it in different ways – there are many other symptoms that people with MS can face.
The following message is being highlighted on World MS Day: Believe MS, even if you can’t see it.
Erin Brady, from Australia, shared her #MyInvisibleMS story: “How dare I park in that disabled parking spot, after all, I look just like you, right? You see, I walk normally, I look like any other person you’d pass in the street. You might shake your head. Hurl abuse, leave a note on my car.
“What you won’t see is that with every step I take, my body fights for its survival just so that I can function like anyone else. A war rages inside of me, with pain that can be so horrific, it is almost indescribable. Like placing your hand on an electric fence and it zaps you, except the voltage runs through me all day, every day.
“Instead of judging a book by its cover, if you followed me, within the hour you would see me needing to sit down within 30 mins, then every 10 to 15 minutes after that, you would see me unfold the walking stick that I carry in my bag. You would see me starting to limp, you would see me starting to sway, you would see me tripping over my own feet on deceivingly flat ground.
“You’d suddenly see that I look like I haven’t slept in a month due to fatigue. Perhaps then you wouldn’t judge me so harshly. Perhaps then, you’d understand that not everyone who has a disability is so obvious on first sight.”
Every year on the 30th of May, the global MS community comes together to share stories, raise awareness and campaign with and for everyone affected by MS with events and campaigns taking place across nearly 100 countries. This year marks 10 years since World MS Day’s inception.
Kostas Mihalakis, from Greece, described his #MyInvisibleMS symptoms and the issues they cause him in work and play: “Being a teacher in a high school, you can understand how difficult it is being in a classroom, standing in front of 25 students and losing stability or not feeling well.
“Plus there are bladder problems. It’s very difficult going on a trip – everyone is looking for the restaurants, or at the view, and you’re just looking for where a toilet is and how you can reach it.
“Then there is fatigue, I think this is my biggest problem. My friends say ‘come here, come there’ and I am so tired I can’t move my legs, I just want to rest. People with MS who are seen as ‘normal’ and can walk, they also have problems, and people should take care of them; know about these invisible issues.”
World MS Day was established by MSIF and its member organisations in 2009 to bring the global MS community together to raise awareness and campaign to improve quality of life with MS.
MSIF provides a toolkit of free resources to help everyone to take part in World MS Day. These tools are available in English, Spanish, Arabic, French and Portuguese.
MS International Federation CEO Peer Baneke 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.”
For more information on how to get involved in World MS Day, visit the website
The MS International Federation (MSIF) is the world’s only global network of MS organisations, people affected by MS, volunteers and staff. The movement is made up of 48 MS organisations with links to many others around the world.
MSIF and its members campaign for increased awareness of the disease, support scientific developments and improve access to treatments and healthcare. Through capacity building, information and resources, MSIF supports and collaborates with organisations in countries where there is limited provision for people with MS.
The global MSIF movement works together to improve the quality of life of everybody affected by MS.