Community Views: What Only We Know

Multiple sclerosis (MS) impacts the body in many ways. Is difficult for those on the outside to understand. There are certain things only other MS warriors fully comprehend. Connecting with others living with MS feels affirming. 

To learn more about these unique issues, we turned to the MultipleSclerosis.net Facebook page. We asked community members to complete this prompt: “Fill in the blank: _____ is something that only someone with MS would understand.” 

One of you captured it well: “When we say, ‘I don’t feel good,’ this has an entirely different meaning.”

The term “invisible illness”

MS is a disease that wreaks havoc that others cannot see. Your symptoms are not always visible. Pain, fatigue, and brain fog affect how you function, but not how you look. Those with MS understand the hurt of dismissal because you “look fine.”

“Acting like everything is normal because you, ‘look like nothing is wrong with you.’”

“Always ‘looking too healthy’ to be sick.”

“Looking fine and acting fine but not being fine.”

The full extent of fatigue

Language falls short of describing the crippling fatigue of MS. You feel weary and exhausted, even after resting. Basic tasks, like showering or dressing, leave you depleted. No amount of rest or stress reduction restores your energy. Those without MS cannot comprehend this reality. 

“Deep fatigue that feels like your bones are weary.”

“Feeling like it’s too much effort to even reach for the television remote.”

“Sleeping but still waking up feeling like you ran a marathon.”

“Needing a nap after a shower.”

Balance issues

Tripping over your own 2 feet is a common occurrence with MS. You fall and bump into walls. Your sense of balance is not what it was. 

“Can’t climb stairs without holding on to a railing; otherwise, balance will throw you off, and people think you’re drunk.”

“Stumbling and falling over nothing on the floor or ground.”

“Being drunk without having had a single drink!! Oh, look, a wall, let me walk right into it!!”

The effect of heat

You have a hard time regulating your body temperature with MS. Heat causes your symptoms to flare. Outside temperatures above 70 or standing too long near the stove make you miserable.

“Being so hot you want air conditioning, but don’t let it blow on your skin because it hurts.”

“Melting like a candy bar.”

“Heat intolerance.”

The MS hug

Those without MS struggle to understand the MS hug. Feeling your core gripped so hard you cannot breathe is agonizing. You can say “MS hug” to fellow MS warriors and receive compassion. They know what it means. No one enjoys this sensation. 

“MS hug – A charlie horse so deep in your body core there’s no way for relief, and other random muscle cramps out of the blue.”

“The kind of hug you don’t want.”

Body vibrations

MS creates tingling vibrations through your body. They usually do not last long but feel odd. Many of you thought you were alone experiencing this symptom. Knowing others share it is affirming.

“Little vibrations anywhere on the body. It comes out of nowhere.”

“The cell phone vibration in my lower back when I bend my neck.”

The intense brain fog

Sometimes, a dense fog seems to settle itself inside your brain. You cannot unclog your thoughts from the pea soup engulfing them. Your memory, words, and communication ability hover out of reach. 

“Not being able to find that elusive word you are searching for to complete a thought.”

“Not remembering words to songs you once sang in bands you were a member of.”

“I didn’t mean to say that; it was my crazy MS talking!”

Bladder function issues

Knowing the location of the bathroom is another trait many of you share. MS compromises your bladder and bowel function. Incontinence products and planning the quickest route to the toilet are a way of life.

“Spastic bladder and bowels. I live in the bathroom day and night.”

“Thinking about your bladder while planning every outing you do.”

“No longer being embarrassed when peeing and/or pooping yourself.”

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