Shattering the Myths of MS
It’s hard enough to understand multiple sclerosis (MS) when you’re the one experiencing it. It’s invisible and unpredictable, and it creates some pretty weird and unexpected symptoms.
So it’s understandable that someone without this firsthand experience can have a hard time understanding what it’s like to live with MS. Yet it doesn’t make it any less frustrating for us to live in a world that doesn’t get our daily struggles and isolation.
It's disheartening to have our reality questioned
That’s why having this community here can be so helpful. It not only reminds us that we’re not alone – there are more than 2 million of us navigating this disease worldwide – but also helps us to connect with people who get it. We can finally hear someone else say, yes, I experience that weird symptom, too.1
And yes, my doctor looked at me like I was crazy, too, when I tried to explain very real symptoms. It’s not just feeling misunderstood by family, friends or neighbors; we can feel misunderstood by our doctors, too.
It's disheartening when your reality is questioned, or worse, dismissed as an overreaction. So, let’s keep our voice strong in correcting these common myths. We may have said them before, but until they’re corrected, they need to be repeated.
Common myths about MS
"Young people don't get MS"
So many people in our community here struggled with unvalidated symptoms for years – sometimes decades – before they received a proper diagnosis. In some cases, the symptoms simply weren’t believed or taken seriously. In other cases, though, they were overlooked because of age.
Even if the doctor suspected MS, that couldn’t be right, because this patient was too young. But people often get diagnosed at a younger age, and it’s certainly helping to dispel this myth.2
"If you don't look sick, you must be exaggerating"
It’s like a punch to the gut just reading these words, isn’t it? "Seeing is believing" certainly doesn’t hold true in our world of MS. We live with an invisible disease, and that’s hard for people to wrap their heads around.
How we look doesn’t tell the whole story. MS symptoms like fatigue, pain, cognitive issues, and countless others can’t be seen. That can unfortunately lead to people assuming that you’re exaggerating or being lazy.3
The other side to this is feeling like you’ll be misjudged on a “good day.” People say things like, “See, you just need to push yourself a little bit, and once you’re up, you’ll feel better.” This takes a lot of patience and grace with our family and friends, and a lot of honest conversations to help them better understand our world.
"MS affects only your physical abilities"
Believing that MS is about only physical challenges is seeing only the tip of the iceberg. Again, what's not as visible are the battles with memory, focus, or even just finding the right word in a conversation.4
There’s also the emotional whirlwind. It's all part of living with MS, even if it's not what people first notice. It’s a package deal, and helping to raise awareness of these invisible symptoms can help our community as a whole feel more seen and understood.3
Your voice matters!
Which myth do you encounter the most often? Is there one that I left out?
Please share in the comments below so that we can keep this conversation going and work to debunk these myths once and for all!
Join the conversation