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.
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.
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.
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.
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.”
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.”
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.
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.
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