Living with multiple sclerosis (MS) is full of challenges. Those without MS may not realize the ways the disease impacts life. 

MultipleSclerosis.net recently asked members of the community to “Fill in the blank: I wish more people understood ____ about MS.”

There were many insights from the responses!

Looking fine is not the whole story

A common response was struggling with the invisibility of symptoms. Assuming the person with MS who looks fine must feel fine is hurtful. MS impacts the body in many unseen ways.

“What is going on inside your body that does not show on the outside but is keeping you from doing what is normal to do for others.”

“How much effort/energy it takes to seem ‘normal.’ When someone greets you and asks, ‘How are you?’ It’s easier to say fine, even though most of the time we aren’t.”

“You may look fine, but you are not, and sometimes you hang on by a thread.”

“That MS doesn’t always look like a person in a wheelchair. It can look like someone at work, in the office, going about their business, and you will have no idea. But they are quietly struggling, in pain, with the temperature of the room, the seating, the pins and needles, and they will be saying nothing and getting on with it.”

“That just because I ‘LOOK’ so good, as they tell me often, I’m not so good on the inside.”

We’re not being lazy or faking

Some friends and family dismiss invisible symptoms. Those with MS hear that they are faking symptoms or being lazy. MS takes a toll on the body. One day, a task may be possible and the next, it might not. Changing symptoms does not mean MS is fake.

“Looking ‘normal’ does not mean we are faking.”

“That MS fatigue is not laziness, and when I say I can’t do something, I really physically/mentally can’t, and it upsets me very much that I can’t.”

“I’m not lazy or stupid. I’m trying so hard fighting.”

“That MS pain is sometimes unexplainable. When we start having pain, we need to stop and rest. We’re not faking it, we’re not attention-seeking, we are in pain almost constantly, and it doesn’t get better. It only hurts.”

“People look at you like you are putting on. They can’t see the hidden, invisible symptoms. They don’t have a clue.”

MS is a chronic disease

There are bad days and better days with MS, but it never goes away. Respondents wish others understood what it means to have a chronic disease.

“We don’t control what our body is doing to itself. There is no cure.”

“Chronic = no break/vacation ever. No cure means we won’t wake up feeling better.”

“That it’s a chronic illness, meaning forever. That it’s like starting every day with an empty gas tank and still having to do all the things like walking, conversing, and so forth.”

The impact of fatigue

MS fatigue goes beyond normal levels of feeling tired or exhausted. It is an energy drain that rest does not solve. There is no powering through when fatigue strikes. 

“When I say I’ve hit the wall, I mean I can go no further today.”

“I need to go at my own pace. Go on ahead. I will eventually get there. Sometimes, I’m going slower because I haven’t adjusted yet to how numb my legs and/or feet are that day/moment. Sometimes, I am just overcome with fatigue, and it is all I can do to put one foot in front of the other.”

“Fatigue. You can be fine 1 minute and totally exhausted the next minute.”

Constantly changing symptoms

MS symptoms change constantly. It is not consistent from day to day. The unpredictability is challenging. 

“How much it affects you physically, mentally, and emotionally. How complicated it can be, and how it seems to affect people’s lives in many different ways.”

“The lifelong, ever-changing FICKLENESS of it!”

“Just how quickly your health status can change between morning, afternoon, and evening—it’s like I am 3 different people all rolled into 1 day.”

“When someone asks how I’m doing, all I can say is that it changes from day to day and even hour by hour.”

MS affects families

MS impacts the entire family system. Life changes for each person, not only the 1 diagnosed. Family members need support and understanding as well.

“The collateral damage. The entire family is affected.”

“That MS affects the entire family. I would love to see more encouragement for the families to seek support and to see that it is okay for them not to be okay.”