Living with multiple sclerosis (MS) can feel lonely. It is hard for others to understand the spectrum of MS symptoms. Fortunately, there are communities to connect with others navigating MS! It makes the journey feel less isolating. 

MultipleSclerosis.net recently posted the following:

“Fill in the blank: ______ is something that only someone with multiple sclerosis would understand.”

This question clearly resonated, as there were over 350 responses! Among the comments, some common themes emerged.

Extreme fatigue

Many respondents shared that MS fatigue is unique to MS. Those without MS cannot fathom the levels of exhaustion MS brings. No amount of sleep restores your energy to the levels you had before MS.

“How fast you can go from ‘normal’ to being totally exhausted.”

“Get a good number of hours of sleep and still wake with no spoons for the day.”

“Extreme fatigue that a nap will not help and like no one else can even begin to understand and so much more.”

“How MUCH sleep is needed to function.”

“Having energy like a battery that has been charged up halfway, and sometimes it can last for 5 hours, and sometimes your battery goes dead in 5 minutes. Then sometimes you can recharge back to halfway in 7 hours, and sometimes it takes 7 days.”

“Being tired ALL THE TIME!!!”

Difficulty moving

Another common response was how difficult it is to move. Walking is a challenge. Feet and legs often feel leaden. Foot drop, stumbling, and falling occur frequently with MS. 

“The ability to walk.”

“When walking feels like you have 50-pound weights hanging from your hips and trying to walk in mud up to your knees. Sometimes all the above at the same time.”

“Feeling like a block of cement not being able to move!”

“Heavy, heavy, heavy legs.”

“Tripping on air.”

Looking fine versus feeling fine

MS is often an invisible disease. It does not show visible physical symptoms. This leads to many insensitive comments from those without MS. Some days are better than others, but respondents are always aware of their MS symptoms. 

“Hearing ‘you don’t look sick’ often.”

“Looking normal and faking feeling normal for people when in reality you feel like you’re dying inside.”

“Even on a good day, never feeling really good.”

“Family and friends not understanding our limitations.”

“Just because we have a good day doesn’t mean we are suddenly healed.”

Bathroom emergencies 

Sudden bladder or bowel urgency is a challenge with MS. Respondents shared it is vital to know the location of the nearest bathroom. Accidents occur frequently. 

“Where the bathrooms are determines my ability to participate.”

“Any place you go to, especially a new place, knowing where the bathroom is and checking the route to get there.”

“Literally pooping the moment I feel the urge sometimes. That’s a real grand time, lol.”

“I gotta pee!!!!!”

Struggling to speak 

MS also impacts the brain’s abilities (cognitive function). Sometimes, words evaporate from the vocabulary. It is hard to remember names, places, or words. It is tough to communicate. 

“Know the word, see the word, unable to speak the word.”

“Giving up teaching at only 50 years old because your executive memory is wonky!”

“Brain fog. Trying to explain something but can’t find the words, only to be met with frustration in response. Using your hands to help describe something you can’t think of only to be met with that same frustration.”

“Instability in forming words in your brain.”

“Not being able to get your words out. Struggling to speak.”

MS hug

The MS hug is a uniquely MS symptom. Respondents share how it feels like the chest is in a vise. The severe tightening makes it difficult to breathe. It is a hug no one wants.

“All hugs aren’t warm and loving. My MS hugs can be the most hateful, painful, and mean moments of my day. I can’t explain how nothing can stop it.”

“MS hug. Absolutely an insane and scary sensation/feeling.”

“MS hug. I went to the emergency room in March with it, thought it was a heart attack.”

Temperature sensitivity 

Many respondents also shared challenges with managing body temperature. Navigating extreme temperatures is difficult. Respondents mentioned heat as being the most taxing. 

“Overheating.”

“Monitoring body temperature – especially at the gym.”

“Cold feet in the heat (summer).”

“Either hot or cold, never just right.”

“On the skin, coldness on the outside but fire burning from the inside.”

“What heat does to you.”