Connect with others who understand.

sign up log in
Resources
About MyMSTeam

Connect with others who understand.

sign up log in
Resources
About MyMSTeam

Member Spotlight: 40 Years with Multiple Sclerosis - Part 1

Posted on August 19, 2019

After being an MSer for almost 40 years I can categorically say that it’s not only fatigue, bladder, or bowel issues that annoy me. Nor is it slurred speech, poor vision, muddled memory, or just plain falling over. The symptoms are all bad enough but by no means is that Pandora’s box of miseries the end of what I face with MS.

Because I’m not in a wheelchair and I don’t always use a walking stick, people unleash a plethora of annoying sympathetic words, sounds, and tropes when they learn I have multiple sclerosis. “Oh dear!” “I never would have guessed!” “But you look so healthy!” “Well done you!” It gets old, especially the last one. Those words make me bristle like I’ve heard nails scratching against a chalkboard.>

I don’t want to be admired for looking as though I’ve just dodged a bullet or an oncoming wheelchair. Admire me, please, for the work I do helping others with MS remember their true potential and not because I’m still standing. It makes no sense to admire me for walking. All it does is spread worry about needing to use a wheelchair.

My late mother used to remind me how lucky I was because there were others worse off than me. At the time as a 20-something I raged at her. I had multiple sclerosis - who on earth could be worse off than me? But of course, there are many with MS who ARE indeed worse off. Many people with MS have more exaggerated symptoms than me. They must deal with a greater intensity of bladder or bowel problems, or a far more pronounced and advanced degeneration of speech, vision, memory, and a whole lot more. Perhaps my mother was right all along.

What having MS truly means is that I am fortunate to be the person I am. This is why I love to help and influence other MSers. I want people with MS to remember who they once were before the worst thing that could ever happen to them, happened. To remind them that it’s just as easy to be full of shine as it is to be gloomy.

What does MS mean to me? It’s that fine line between living life or living MS. After nearly four decades I think I know where the living is and it’s not with multiple sclerosis.

This article was written by MyMSTeam member Martin as part of the Member Spotlight Series. Martin has secondary progressive multiple sclerosis and is a writer who often blogs about his experience with MS. Read Part 2 & Part 3 to Martin's story.

Do you want to be a part of the MyMSTeam Member Spotlight Series?
Let us know here: support@MyMSTeam.com

All updates must be accompanied by text or a picture.

Related articles

In partnership with GoodRx
As time goes on, we encounter a staggering number of changes, and we feel the growth of our new...

Ask the MS Warrior: How I Explain My ‘Bad Days’ to Others

As time goes on, we encounter a staggering number of changes, and we feel the growth of our new...
Jenna Green was diagnosed with relapsing-remitting MS at the age of 31. After her insurance...

Living With Multiple Sclerosis: How Jenna Green Became an Advocate

Jenna Green was diagnosed with relapsing-remitting MS at the age of 31. After her insurance...
Being diagnosed with multiple sclerosis (MS) in 2019 caused me to feel like I’d been catapulted...

Ask the MS Warrior: How I Continue Practicing My Favorite Hobbies

Being diagnosed with multiple sclerosis (MS) in 2019 caused me to feel like I’d been catapulted...
Those of us in the multiple sclerosis (MS) community understand the power of sharing the journey...

Ask the MS Warrior: How I Deal With Random Overheating Incidents

Those of us in the multiple sclerosis (MS) community understand the power of sharing the journey...
Back in 1997, when I was first officially diagnosed with multiple sclerosis (MS), I never thought...

MS Management 101: Finding Resources Following My MS Diagnosis

Back in 1997, when I was first officially diagnosed with multiple sclerosis (MS), I never thought...

Recent articles

If you’re living with multiple sclerosis (MS), you are familiar with the common symptoms of the...

Why Does It Feel Like Something Is Stuck Between Your Toes?

If you’re living with multiple sclerosis (MS), you are familiar with the common symptoms of the...
When you’re living with multiple sclerosis (MS), symptoms and sensations can become a part of...

Unusual Sensations and MS: Causes and When to Worry

When you’re living with multiple sclerosis (MS), symptoms and sensations can become a part of...
Walking impairment is one of the most common symptoms of multiple sclerosis (MS). Many people...

Managing MS Gait and Walking Difficulties

Walking impairment is one of the most common symptoms of multiple sclerosis (MS). Many people...
Some people with MS experience involuntarily biting their tongue.

Why You May Accidentally Bite Your Tongue When Talking

Some people with MS experience involuntarily biting their tongue.
Multiple sclerosis (MS) affects everyone with the condition differently, causing a variety of...

Why Does Your Face Turn Red When You Poop?

Multiple sclerosis (MS) affects everyone with the condition differently, causing a variety of...
People who live with multiple sclerosis (MS) can experience a variety of symptoms, not all of...

Why Does One Side of Your Face Feel Hot and Sensitive?

People who live with multiple sclerosis (MS) can experience a variety of symptoms, not all of...
MyMSTeam My multiple sclerosis Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close