Walking into town. Teaching at the front of class. Drinking coffee in the local cafe. Normal life, right? For some. Others may appear to be going about an ‘everyday’ life, but they’re experiencing MS. Invisibly.

Many people living with multiple sclerosis (MS) experience symptoms that those around them don’t see. This can cause great frustration, as it means many don’t understand the impact MS can have on quality of life.

Today, on World MS Day, the MS International Federation (MSIF), MS organisations, and the 2.3 million living with MS worldwide urge the public to learn more about the invisible symptoms of MS. People affected by MS from right across the world are sharing their #MyInvisibleMS stories on social media today.

Some of the most common invisible MS symptoms include brain fog, fatigue, pain, muscle spasms, dizziness, heat sensitivity, depression – plus mobility, sight and even 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 message is clear; believe MS, even if you can’t see it.

Erin Brady, from Australia shares 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.”

Kostas Mihalakis from Greece, describes 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.”

MS International Federation CEO, Peer Baneke comments:

“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.”

Every year on 30 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. In fact, this year marks 10 years since its inception.  For more information on how you can get involved, please visit the World MS Day website: https://worldmsday.org/.  

Common MS myths and truths

• MYTH: MS is the same for everyone. TRUTH: Everyone’s MS is unique. People may experience different symptoms at different times and the impact of these symptoms can vary.

• MYTH: There’s no cure for MS, so scientists clearly aren’t making much progress. TRUTH: Research has brought many life-changing treatments that can control or slow down MS and help many people manage symptoms.

• MYTH: People with MS can’t have children. TRUTH: Having MS should not stop people from having a baby, but careful planning with family and doctors is especially important for people with MS.

• MYTH: People with MS can’t work. TRUTH: Many people – especially those with less severe MS – can stay in work. Support from employers and fellow colleagues is crucial.

• MYTH: MS is a terminal condition. TRUTH: While MS can reduce life expectancy, most people live for decades after their diagnosis. This is why it’s considered a chronic long term condition, not a terminal condition.

• MYTH: A person with MS should not exercise. TRUTH: Regular, moderate exercise can help with many MS symptoms and benefit overall health and wellbeing.

• MYTH: Everyone with MS will end up in a wheelchair. TRUTH: Most people with MS don’t need to use a wheelchair on a regular basis, especially with early diagnosis and treatment.

World MS Day

World MS Day was established by the MS International Federation (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. World MS Day is officially marked on 30 May each year. Events and campaigns take place throughout the month of May.

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. Anyone can use these tools, or make their own, to create positive change in the lives of more than 2.3 million people around the world. For more information, please visit the World MS Day website: https://worldmsday.org/.   

Multiple sclerosis (MS)

Multiple sclerosis (MS) is one of the most common neurological disorders and causes of disability in young adults.

There are 2.3 million people with MS worldwide. It is likely that hundreds of thousands more remain undiagnosed and many lives are affected indirectly, through caring for someone with MS. Most people with MS are diagnosed between the ages of 25 and 31, with around twice as many women diagnosed as men.

The cause of MS is not yet known and as yet there is no cure, though there are treatments available that can help some forms of MS and there are many options to improve and manage the symptoms.

There’s no set pattern to the severity of someone’s MS, the course it takes and the symptoms they experience. Every person is different. Symptoms can include blurred vision, weak limbs, tingling sensations, unsteadiness, memory problems and fatigue.

For some people, MS is characterised by periods of relapse and remission (meaning it gets better for a while but then can attack from time to time), while for others it has a progressive pattern (meaning that it gets steadily worse with time). Some people may feel and seem healthy for many years following diagnosis, while others may be severely debilitated very quickly.

MS makes life unpredictable for everyone. To find out more about MS, get in touch with an MS organisation near you or visit the MS International Federation website: https://www.msif.org/

The MS International Federation (MSIF)

The MS International Federation (MSIF) is the world’s only global network of MS organisations, people affected by MS, volunteers and staff from around the world. 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.