Living With Multiple Sclerosis: Finding the Beauty in the Journey
Key takeaways:
When she was diagnosed with multiple sclerosis, Lindsey Holcomb felt overwhelmed at first.
She found a way to connect with others in the chronic illness community through art.
Lindsey encourages others to do the things that bring them joy.
Lindsey Holcomb is a 39-year-old artist from Hillsboro, Oregon. When she got diagnosed with multiple sclerosis (MS) in 2017, she felt relieved. She had something that finally explained all of the symptoms she had been going through.
Once that feeling wore off, Lindsey experienced a lot of fear, which she says was out of 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,’” she says.
She remembers thinking that her world was going to get smaller.
Overloaded by information
Lindsey says her narrow understanding of MS overwhelmed her at the beginning of her journey. As the first person in her family to have MS, she had a lot to learn.
To get a better understanding of the disease, Lindsey started doing her own research: “I ordered every possible thing I could possibly think of that would help explain what it was that I was up against.”
She says doing research was both wonderful and awful. Getting all the facts did not give her any space to grieve. But she wishes she had taken some time to get used to the idea of having MS before jumping in.
Find what works for you
Lindsey learned that not every book is helpful for everyone and that people find what works for them.
She found one author’s firsthand accounts helpful 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. She found that in-person meetings with MS groups didn’t work for her at first. And certain Facebook groups were frightening.
Over time, Lindsey 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,” Lindsey says.
A private moment turned public project
Lindsey found expressing herself through art to be therapeutic. One personal piece developed into a public art project called “Colors of MS.”
It started with a painting of her own MRI and became a way to turn her radiology scans into art.
She says 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.
Detail image of Lindsey’s art:
On a whim, Lindsey decided to share her work online. When she was on vacation with her family, the National MS Society shared the art on their Instagram account. She felt a lot of comfort from the comments and the fact that it resonated with people to see MS from a different angle.
That led to Lindsey connecting with others in the MS community and helping them access their own MRI images. She has painted nearly 200 pieces for others based on their MRIs. No work of art is the same, and everyone has the option to make their commission public or keep it to themselves.
Lindsey says the work energizes her: “I fell in love with it unexpectedly.”
Not fitting others expectations
Like her art, Lindsey says 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 says. “And the next day, I’m going to be hobbling around.”
The nature of how MS is different for each person makes her gentle with her advice, she says: “It’s not a one-size-fits-all thing.”
Being honest about your journey
Lindsey says that, when it comes to approaching family life as a parent with MS, finding balance is a continual quest. She has learned that asking for help is important. Being open about if it is a good day or a bad day is something that has helped her family.
She also plans time to rest before and after any event or deadline. This creates an energy struggle as a parent, but she knows the planned rest is necessary.
Lindsey says being open with her school-age kids has made them more empathetic. She reads them 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 says.
Patience, grace, and time
Five years after her diagnosis, Lindsey is still learning how to take care of herself by adjusting and slowing down. One thing she would say to her pre-diagnosis self is: “Nobody knows you’re drowning until you’ve drowned.”
She says she gives herself patience, grace, and time.
She connects with people on Instagram and enjoys doing exercises and yoga adapted for people with MS. She says listening to her body and taking care of herself make a difference.
“Do the things that bring you joy, without guilt,” she says. “Be better.”
Lindsey told her story as part of a partnership between GoodRx Health and MyHealthTeams, which creates social networks for people living with chronic conditions. MyMSTeam is the social network for people diagnosed with multiple sclerosis (MS). 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.
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