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Uncovering stories of progression from the MS community

Every person living with multiple sclerosis (MS) has their own story to tell.

MS is a progressive condition from the start, and this progression can manifest itself in many different ways. For some people, the symptoms associated with MS can be easier to identify as the disease progresses. However, for many people, these symptoms – and the progression of the disease – may appear invisible. The impact of these symptoms on quality of life can all too often be unseen by others.

World MS Day takes place every year in May, and for 2019 the theme focused on raising awareness of the invisible symptoms of MS and their unseen impact on the quality of life of those living with this condition.

To champion those affected by MS, we highlight the stories of some of the community and hear them express what they want others to know about the often invisible symptoms of the MS, as well as their journey to managing them.

Birgit-740

“My advice would be to talk clear about everything you have in MS, no matter if it is a little bit embarrassing or it’s a usual thing.”

“We have to talk more about MS, we have to talk about MS in a very open way, because when we hide the symptoms and when we leave them in this invisible status, we are hiding ourselves.”

Birgit, living with MS, Germany

Rachel-740

“When I hear about hidden symptoms of MS, I immediately empathise because I know exactly what people are talking about.”

“By now, my family and close friends do understand most of my symptoms because I've explained it to them. But then sometimes I'll develop a slightly new symptom, and I'll have to explain to them what I'm going through, what it feels like, and how can they just be a bit more patient with me.”

Rachel, living with MS, Canada

Alexandre-740

“There are a lot of symptoms of MS. Most of them are not visible, and fatigue is one of them. Fatigue is something that really creates an obstacle to your sports activity, for instance. Or, to being able to give classes standing, because I get really tired after 20 minutes, 25 minutes of being in the standing position.”

Alexandre, living with MS, Portugal

Jacobo-740

“People do not realise that I have trouble with looking at them. Like if someone comes up to me, I cannot see them. I may recognise them by their voice, but I am not going to be able to say directly who this person is.”

“I would say that the most important thing is to raise awareness not only among doctors, but in the general public, everyone. To raise awareness that this disease exists and that it may appear whenever the disease wants…and be aware that someone around you may have it.”

Jacobo, living with MS, Spain

Gustavo-740

“If I said to you that I barely feel my left leg, would you believe it? That's what I'm facing every day because it's hard to explain to others that my disease is not bleeding or you cannot see my symptom.”

“It's not about doing something on my own, it's about doing something sometimes with others, but still feeling that I'm independent.”

Gustavo, living with MS, Brazil

Paula-740

“When people can't really see what I'm experiencing or can't feel it, I notice, When I'm in an environment where I'm feeling something and I'm with people that don’t, I feel quite separate to them.”

“I think to somebody who is newly diagnosed, I would say get out there, try and speak to people who have MS. Because, they understand… There is an empathy between people with MS. They just get it.”

Paula, living with MS, United Kingdom

It’s an important reminder that while you may not be able to see the symptoms that someone with MS is experiencing, they’re there – and every person is living their journey in their own way.

By starting a conversation, you can help to raise awareness of the hidden impact of MS and support people in better recognising the disease, as well as understanding how they can be providing the best support in helping those impacted by MS live their life to the fullest.

Share your story of your invisible MS symptoms on social media using #MyInvisibleMS to get the conversation started.

Related links

Tags: Patients, Multiple sclerosis, Neuroscience