When a health condition is invisible to others, people who do not have the condition may struggle to understand it. This is often the case with multiple sclerosis (MS).
Many MS symptoms cannot be seen. This can be incredibly tough for people living with MS. Those around them do not always understand what they are dealing with, even after they try to explain.
To find out more about the MS community’s experiences, we reached out to the MultipleSclerosis.net Facebook page. We asked, “What is one thing about MS that you wish people understood?”
Nearly 200 community members responded. Here are the themes that emerged from what they shared.
This diagnosis is largely invisible
Unless someone is having immediate trouble walking or moving, MS is an invisible disease. Because other people cannot see it, they may assume the person is faking or exaggerating. This can make the person feel upset or misunderstood.
“It is invisible to most. The struggle is real.”
“We may look good on the outside, but it sucks to feel horrible on the inside.”
It is often lonely
As people with MS begin to adjust to life with the condition, they often feel isolated. Their friends and family may try to understand the diagnosis, but research can only take them so far.
Only people who have MS truly know what it is like. Because of this, making connections within the MS community can be helpful, either online or in person. That way, you have a place to vent and find support and a deeper understanding.
“The biggest one for me is how lonely this disease makes me feel. It is like you are in prison inside your own body watching everyone on the outside live their lives. Here I am stuck.”
The fatigue is real
Fatigue is one of the most common symptoms of MS, and it does not go away with a nap or more sleep. Someone with MS may be extremely fatigued after doing a chore or completing a physical task. This fatigue is a tough and often debilitating part of the diagnosis.
“It takes every ounce of strength to make it through the day. Taking a nap does not help at all.”
“Fatigue does not equal being tired.”
“That I have to plan for exhaustion. It is not because I am out of shape. It is because after I complete a task, I might not have use of my legs later.”
People mistake walking problems for something else
Several people in the MS community shared that they have been asked if they were drunk when they were simply walking. Sadly, bystanders can be mean, and they may express opinions about things that are not their business. People who live with MS know that MS damages the neural pathways, making it harder for them to tell their bodies to move.
“Just because I walk like I am drunk does not mean I am. It just means I have severe balance problems.”
“My stumbling around does not mean I am drunk. It is so frustrating trying to walk and keep my balance.”
Having MS requires self-care and rest
Given how often people with MS experience fatigue, many in the community have learned how to prioritize rest and self-care. They have learned what will leave them feeling exhausted, so they either say no to that thing or plan for some extra downtime afterward. Some respondents expressed that they should not be expected to give as much physical or otherwise as someone who does not have MS.
“Taking care of yourself is not being selfish.”
Explanations and apologies are not owed to anyone
An MS diagnosis is not the only exhausting thing the respondents live with. So are the comments and questions from people who do not understand. Questions can be nice if someone is trying to learn about MS. But respondents described how much of the questioning is more like prodding, pushing them to do more than they feel comfortable with.
“It took me a long time to stop apologizing for not feeling good because I look normal. I decided if I cannot do something, I am not doing it to make everyone happy and myself miserable. I wish people understood you can be OK one second and not the next.”
“I am sorry when I do not feel well and have to change plans. The pain, lightheadedness, and exhaustion are unpredictable. There is no one more tired of hearing me say ‘I am tired’ than me.”