What Is It Like Growing Up With MS?

MultipleSclerosis.net illustration of a cartoon hand with a blue crayon coloring blue and black word balloons

Getting a multiple sclerosis (MS) diagnosis early in life can present unique challenges. Many teachers and principals are still learning how to best help students with MS. Also, young adults may not know how to act with a classmate who faces problems they do not understand. For young people with MS, this can cause a strain on their social life.

To find out more about these challenges, we asked our MultipleSclerosis.net Facebook community members: “Did or do you have MS as a kid, teen, or young adult? What was or is school and social life like?”

More than 150 people responded. Here is some of what they shared.

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A Hobby Lobby

By Doug Ankerman

Work may define us but it is our hobbies that makes us unique.

Hobbies give you zest. Give you fire. They put a sparkle in your eye.

A hobby is what makes you – YOU.

So don’t let anything, like the dreaded ick we call multiple sclerosis, take your hobbies away from you.

MS is no reason to give up an activity you love. Accommodations can be made so you may continue doing what you want to do.

Like to paint but can’t hold a brush? Don’t let that stop you. There are dozens of computer programs that allow you to create (and no messy clean-up!).

Like to dance but can’t stand? Take a chair onto the dance floor, plop down & shake your bootie, dammit. Believe me, you’ll have more dance partners than you can handle as others will gravitate to your spunk.

Like to garden? Get down & get dirty. I can’t walk in grass & mulch either, so I crawl through the flowerbeds slow as an earthworm. A garden gnome with filthy knees.

My point is, you can do whatever you want…by planning. Come to terms with your MS by saying “We’re gonna do it within reason, and this is how.” Then do it.

Here are a few of my favorite daily activities…

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Joy in Hobbies 

By Lauren Kovacs

Joy seems to morph. Be open to fluid change. The changes in MS will make you see the ebb and flow. Ride the wave. The current might bring you to a hobby you would never try.

Yah yah, flowery language aside. Embrace the change, people. Try to at least. MS is about trying. Try on many faces until it fits. It is kinda like jeans. You try on several pairs. If your butt looks good, buy them. If you can do it and like it, try it.  But, remember to rest and don’t get hot.

Try a new hobby. If MS changes, try another. If it is not for you, try another. The list is endless. No tests or grades.  Maybe try something outside the box.  

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The Liberation & Necessity of Hobby Accommodations

By Stacie Prada

Often the statement is said, “MS took from me…(fill in the blank)…”  Multiple sclerosis takes a lot physically and emotionally, and it is frustrating and depressing. There’s no getting around the ongoing loss and grieving process of living with a chronic and progressive illness. It deserves acknowledgement and shouldn’t be minimized or dismissed.

Image of an orange colored post-it reading "Hobby Accommodations" emphasizing the topic of guest blogger Stacie Prada

Being optimistic and living well with MS demands immense resilience and coping skills. It also benefits from accommodations and adaptive technology. While often described and prescribed for work and personal grooming, accommodations that support ongoing participation in hobbies are especially joy-inducing. They help reduce or perhaps delay some things on the long list of things that MS took from a person.

Accommodations are crucial for how they can make an activity rewarding and fulfilling instead of a reminder of how much we can’t do anymore. Thinking about what makes an activity difficult will help determine which accommodations would be useful for an individual.

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Roasted Ranch Brussels Sprouts

Recipe of the Month from MSAA's MS Conversations blog

These Roasted Brussels Sprouts with ranch flavoring are amazing and easy to make. This is a quick and delicious recipe that takes Roasted Brussels Sprouts to the next level. These savory and crispy Brussels Sprouts are always a crowd favorite in my house.

Ingredients:

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Color Your Way to Happiness

Investing in a hobby welcomes joy, happiness, and relaxation into our lives. Having a hobby allows you to take a break from your day-to-day routine and carve out time to devote to yourself. Hobbies keep you in the moment, drifting your mind away and focusing on an activity that you love. Not only do purposeful activities add joy to our lives, but they are known to improve mood, mental clarity, and our overall well-being.

Art is a wonderful outlet for self-expression and creativity. Sketching is a hobby I enjoy when I need to unwind and decompress. With soft, mellow music playing in the background, my brain enters a meditative state and I feel relaxed. Being hyper-focused on the drawing allows for creative and open-ended thinking.

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Now Available – The Latest Edition of The Motivator

Motivator magazine latest issue cover and imagery depicting people participating in artistic hobbies

Having a hobby can be one of the most rewarding aspects of day-to-day life. Discovering something that you are passionate about and can do in your free time is an invaluable way to enrich your life for the better.

In our latest edition of The Motivator magazine, “The Therapeutic Value of the Arts” is explored. In this cover story, we discuss how participating in the arts can benefit individuals both mentally and physically, leading to a more positive outlook and a better quality of life. Art therapists, music therapists, and other types of therapists have worked with individuals with MS and have achieved very positive results. Music, art, photography, and writing are all explored as avenues of creativity that members of the MS community can enjoy, no matter their skill level.

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We Are All Artists

Art is an excellent way to improve your well-being, regardless of your artistic experience. It promotes self-expression, mindfulness, and the reduction of stress. Although all forms of art can be beneficial and promote peace and relaxation, it is important to find an activity that brings you joy and accommodates your lifestyle. Here are some examples of therapeutic art activities that you might like:

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Tiny Pursuits Of Happiness

Having a hobby is great way for anyone to disengage themselves from their regular routine and derive purpose and meaning from life. Investing your time and energy in an activity that helps you unwind can do wonders for your heart, mind, and soul.

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Andrea McCallum – May 2022 Artist of the Month

Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Andrea McCallum of Elko, NV:

Andrea McCallum artwork entitled Tranquility for MSAA's Artist of the Month blog post
“Tranquility”

About the Artist – Andrea McCallum

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