Living With Multiple Sclerosis: Finding the Beauty in the Journey | MyMSTeam

Connect with others who understand.

sign up Log in
Resources
About MyMSTeam
Powered By
See answer
In partnership with GoodRx ?

Living With Multiple Sclerosis: Finding the Beauty in the Journey

Medically reviewed by Mandy Armitage, M.D.
Posted on August 24, 2022

  • When Lindsey Holcomb was diagnosed with multiple sclerosis (MS) in 2017, her first reaction was relief, which was soon replaced by fear.
  • Turning imaging scans into beautiful works of art has helped Holcomb understand her diagnosis and provides a means of therapy.
  • Holcomb has learned to be honest with loved ones about how she’s feeling and to listen to what her body tells her it needs — like rest.

Lindsey Holcomb’s initial reaction to being diagnosed with multiple sclerosis was relief. The artist from Hillsboro, Oregon, whose diagnosis came in 2017, finally had an explanation for all the symptoms she had been experiencing.

Once that feeling wore off, however, Holcomb felt a lot of fear, which she says came from a lack of understanding. “I instantly went, ‘OK, I’m not going to be able to walk at all. This is what my life is going to be like,’” said Holcomb, now age 39.

She remembers thinking that her world was going to get smaller.

Information Overload

Holcomb’s narrow understanding of MS overwhelmed her at the beginning of her journey, she said. As the first person in her family to have MS, she had a lot to learn.

To get a better understanding of the disease, Holcomb started doing her own research: “I ordered every possible thing I could think of that would help explain what I was up against.”

Immersing herself in the research was both wonderful and awful, she said. Gathering all the facts did not leave her any space to grieve, but she now wishes that she had taken time to get used to the idea of having MS before jumping in.

Trial and Error

Holcomb learned that not every book is helpful for everyone and that people find what works for them.

She found one author’s firsthand accounts useful in the beginning, but she wanted to go beyond the clinical side of MS. Reaching out to others with MS helped her begin to form a new outlook on life.

Finding the right people to connect with took trial and error. In-person meetings with MS groups didn’t work for her at first, she said, and she found certain Facebook groups frightening. Over time, Holcomb gave herself permission to not join things just because she lives with MS.

Seeing marathoners, authors, and people from all walks of life doing inspiring things helped ease her fears. “You can still thrive and have a really vibrant life, no matter how you have to live it or what it looks like for you,” Holcomb said.

A Private Moment Turned Public Project

Holcomb found expressing herself through art to be therapeutic. One personal piece evolved into a public art project called “Color of MS.” The project started with a painting of her own MRI scan and became a way to turn her radiology scans into art.

She said she felt freaked out at first by medical images of her organs, but the paintings gave her a visual way to understand her new diagnosis — and she found creativity and beauty in the final products.

Lindsey Holcomb creates art out of MRI scans.
Lindsey Holcomb transformed imaging scans into artistic works, such as this detail from “Colors of MS.” (Lindsey Holcomb)


On a whim, Holcomb decided to share her work online. While she was on vacation with her family, the National Multiple Sclerosis Society shared the art on its Instagram account. Holcomb took a lot of comfort from the comments, which showed how much seeing MS from a different angle resonated with people.

That led Holcomb to connect with others in the MS community and help them access their own MRI images. She has painted nearly 200 pieces for others based on their scans. No work of art is the same, and everyone has the option to make their commission public or keep it to themselves.

Holcomb says the work energizes her: “I fell in love with it unexpectedly.”

Not Fitting Others’ Expectations

Like her art, Holcomb explains, MS doesn’t look the same for everyone. For her, sometimes it means using a cane for assistance. “One day, I look just as able-bodied as any other person,” she said. “And the next day, I’m going to be hobbling around.”

Because the nature of MS is that it differs for each person, Holcomb offers advice gently, she said: “It’s not a one-size-fits-all thing.”

Honesty About the Journey

When it comes to approaching family life as a parent with MS, Holcomb said, finding balance is a continual quest. She has learned the importance of asking for help and being open about whether she’s having a good day or a bad day. This honesty has helped her family, she said.

She also sets aside time to rest before and after any event or deadline. For a parent, this becomes an energy struggle, but she knows that the planned rest is necessary.

Being open with her school-age kids has made them more empathetic, Holcomb said. She reads to them from children’s books that help them understand what it means to have a parent with chronic illness. “To see that normalized is so beautiful,” she said.

Patience, Grace, and Time

Five years after her diagnosis, Holcomb is still learning how to take care of herself by adjusting and slowing down. One thing she would tell her prediagnosis self: “Nobody knows you’re drowning until you’ve drowned.”

She gives herself patience, grace, and time.

Holcomb connects with people on Instagram and enjoys doing exercise and yoga routines adapted for people with MS. Listening to her body and taking care of herself make a difference: “Do the things that bring you joy, without guilt,” she said. “Be better.”

Lindsey Holcomb told her story as part of a partnership between GoodRx Health and MyHealthTeam, which creates social networks for people living with chronic conditions. MyMSTeam is the social network for people diagnosed with multiple sclerosis. Members share their firsthand experiences, practical tips, and emotional support in a secure online community. Medical experts and specialists share trusted information via articles, videos, and virtual events. MyMSTeam is free to join and available via mobile app and the web.

GoodRx believes sharing your health journey can educate and inspire others. Want to tell your story? Follow these steps to share yours.

Posted on August 24, 2022
All updates must be accompanied by text or a picture.

We'd love to hear from you! Please share your name and email to post and read comments.

You'll also get the latest articles directly to your inbox.

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Mandy Armitage, M.D. is the medical director of editorial services at GoodRx Health. Learn more about her here.
Rebecca Samuelson, MFA is a Bay Area poet from Hayward, California, who writes from the intersection of caretaking and grief. Learn more about her here.

Related Articles

Dani had just started a new job when she was diagnosed with multiple sclerosis.“I had to advocate...

My Advocacy Tips: Taking Care of Future Me With MS

Dani had just started a new job when she was diagnosed with multiple sclerosis.“I had to advocate...
In a recent survey, 81 percent of MyMSTeam members reported that multiple sclerosis (MS) negative...

Stress, Affording Treatment, and Quality of Life With MS: See Survey Results

In a recent survey, 81 percent of MyMSTeam members reported that multiple sclerosis (MS) negative...
YogaVista.tv and MyMSTeam have partnered to bring you these mini-lessons or "yoga snacks."

Easy Movement Videos for People With MS

YogaVista.tv and MyMSTeam have partnered to bring you these mini-lessons or "yoga snacks."
After getting her official multiple sclerosis diagnosis in 2022, Karina Llamas decided that inje...

How I Got Over My Fear of Needles To Have My Best Shot With MS

After getting her official multiple sclerosis diagnosis in 2022, Karina Llamas decided that inje...
As time goes on, we encounter a staggering number of changes, and we feel the growth of our new w...

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 w...
Jenna Green was diagnosed with relapsing-remitting MS at the age of 31. After her insurance comp...

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 comp...

Recent Articles

Las bebidas con cafeína son un elemento básico matutino para muchas personas en todo el mundo. La...

La cafeína y la esclerosis múltiple: ocho cosas que debe saber

Las bebidas con cafeína son un elemento básico matutino para muchas personas en todo el mundo. La...
Transcripción00:00:09:49 - 00:00:33:91Eric PeacockUn último tema aparte ahora, fuera de la espas...

¿Alguna vez se descubrirá una cura para la esclerosis múltiple? El Dr. Boster explica los avances en la investigación

Transcripción00:00:09:49 - 00:00:33:91Eric PeacockUn último tema aparte ahora, fuera de la espas...
Multiple sclerosis (MS) is an inflammatory disease that affects the central nervous system (CNS),...

What Is Smoldering MS? Inflammation May Linger During Remission

Multiple sclerosis (MS) is an inflammatory disease that affects the central nervous system (CNS),...
There are four actions you can take now to improve your quality of life with MS until a cure is f...

Will There Ever Be a Cure for MS? Dr. Boster Explains Research Advances (VIDEO)

There are four actions you can take now to improve your quality of life with MS until a cure is f...
How I Balance Life and Stress With MSLindsey Holcomb shares how she balances her life and stress...

8 Tips for Managing Stress With MS (VIDEO)

How I Balance Life and Stress With MSLindsey Holcomb shares how she balances her life and stress...
Leading multiple sclerosis (MS) experts recommend people with MS get booster vaccinations against...

MS Symptoms and COVID-19 Vaccines: Is There a Relapse Risk?

Leading multiple sclerosis (MS) experts recommend people with MS get booster vaccinations against...
MyMSTeam My multiple sclerosis Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close