6 Things I Want You to Know About Living with MS

Bezzy MS community members share the hardest parts of living with multiple sclerosis that they wish others understood.

Living with multiple sclerosis (MS) can feel isolating — especially when it feels like those around you don’t understand what you’re going through every day.

MS is a chronic condition in which your immune system attacks myelin, a protective tissue that surrounds the nerves in your central nervous system.

Myelin is necessary in order for signals to pass through nerves in your brain and spinal cord.

When myelin is damaged, it can leave scarring. Over time, this can cause nerve fibers to break, which can disrupt many important bodily functions such as digestion, vision, mobility, balance, and coordination.

The symptoms of MS can manifest very differently from person to person. Many people living with MS have very few visible symptoms. This can make it challenging for others to recognize how life-altering MS really is.

Members of the Bezzy MS community shared the most difficult aspects of living with MS that they wish other people understood.

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It’s hard to let go of who I was before

“The most difficult thing for me is not being the person I was ‘before MS.’

I was active, climbing mountains and racing cars. Now it’s a struggle to motivate myself to even work on one of my hobbies. What used to be an easy task is a struggle now. It is so hard to keep motivated.” — Riptide

I worry about what the future holds

“Lately, I’ve been getting dizzy as I walk to work, it comes and goes.

I basically just power through it and nobody knows what I am going through at work. I am worried that one day I will not be able to power my way through it.“ — Kdence

I miss being active like I once was

“I have tingling in both feet that causes me to shuffle my feet. I also have a dull achy pain in my left hip. It feels very weak and can throw off my balance, too.

Simply trying to walk is hard. I have to hold onto the walls or furniture to move. I use a cane mostly.

I was riding my bike just 2 years ago. Now, my balance hasn’t allowed for that. I can’t go on power walks anymore. Whenever I see people walking, jogging, or riding by, I feel so sad.

They don’t know how lucky they really are. Trying to just move about is so tiring.” — Troi McKinnon

I am living with pain that others can’t see

“The fact that no one understands MS is hard. It’s difficult living in pain while no one else can even comprehend what’s going on for me.

I’m glad the people around me at least try, but it is so isolating knowing that no one in my friend group will actually understand.“ — Val

My invisible symptoms are valid

“The hardest part for me is feeling unheard and unvalidated when I experience invisible symptoms. Other people just tell me it’s ‘not that bad.’“ — Carrie Mills

The fatigue makes it hard to keep in touch with friends

“Not keeping up a lot of friendships anymore is really hard. If I do anything more than my normal routine, it makes me tired for at least the next day or two.

Then I constantly feel like I’m playing catch up. I have a best friend who understands most of the time, but I just don’t have time for coffee or lunch catch-ups with people that have no clue what I’m going through.

I abstract paint, that brings me joy, and I listen to a lot of self-development which keeps me positive and grateful.

I have pulled away from being socially busy just for the sake of being popular and am just concentrating on what brings me pure joy.

I believe in quality, not quantity of friendships. Fatigue 100% has stopped me from living the same life as before, but I actually feel MS has made me concentrate on what is most important to me and prioritize that!” — Sonya Webster

The bottom line

Chronic conditions like MS not only cause physical symptoms but can also significantly affect your social, psychological, and emotional well-being.

It can feel isolating when it seems like other people don’t understand the reality of your life with MS.

It’s important to remember that even the invisible challenges of living with MS are real and valid. It’s also important to know that prioritizing what your body needs is OK — and necessary.

Whether you have recently been diagnosed with MS, or have been navigating MS for decades, the Bezzy MS community is a great place to connect with others who understand what you’re going through.

Article originally appeared on August 31, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on August 30, 2021.