Why I Advocate: Elizabeth’s MS Story

“I feel like I’m helping myself 16 years back when I didn’t know anyone with MS or what to do or what a relapse even was.”

During her sophomore year of college in 2004, Elizabeth McLachlan began feeling numbness and tingling in her feet.

“I went to the student health center doctor and he suggested taking ibuprofen three times a day. After about a month, the sensation seemed to go away,” McLachlan says.

However, a few months later, she went night sledding with friends near her Utah-based school, and got clotheslined. While she was able to move after the incident, she felt numbness on the entire left side of her body.

The school doctor referred her to a neurologist who recommended she receive an MRI.

“I ended up picking up the report to bring to my doctor and I read the diagnosis, multiple sclerosis (MS), as I was walking back to my dorm. My parents had come from North Carolina because they were worried, and as soon as I saw them, I told them. It was rattling,” says McLachlan.

In addition to the shocking news, she was devastated that her condition kept her from going on a school to trip to India.

“I was studying social cultural anthropology and was planning to go to South India for a research project,” she says. “Missing it made me the saddest, but I had a wonderful professor who said I could go on the following trip there.”

She ended up attending two trips to India, while medication kept flares at bay. However, after the second trip, she had a relapse that left her with back spasms and unable to walk.

“It became too much to stay in school and I went back home and finished my degree online,” she says.

After two years living with the relapse, McLachlan began to feel relief. She decided to stop medication for 10 years while she tried to manage her condition with diet and exercise. During that time, she got married and had two children.

“My doctor agreed to let me stay off medication until I was done breastfeeding, but I waited too long after I weaned my second baby, and I started noticing I was more tired and fatigued. But I was also a busy mom and tried to keep going,” says McLachlan.

She decided to go on a family vacation and start treatment when she returned.

“I had a relapse after the vacation that left a lesion on my brain stem. After that I was left with permanent partial numbness in my feet, legs, arms, and hands that comes and goes,” she explains.

In 2018, her doctor prescribed a different medication along with physical and occupational therapy that helped with relapse.

Join the free MS community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

Finding support and inspiration to speak out

During her 2018 relapse, McLachlan fell into depression.

“My husband suggested I stay with my parents for a bit, so I could get a break from taking care of the kids. I was in a bad place and with the time I had, I began searching online for MS support groups,” she says.

She came across the free Bezzy MS app and immediately found comfort in it.

“The app gave me something I never had — connections with other people with MS,” she says. “In the 14 years I had MS, I had probably only met 4 people with MS. I liked swapping stories with people on the app. It helped me through a hard time in my life.”

She recently became one of the app’s ambassadors, which allows her to lead group discussions with community members about different topics, such as diagnosis, treatment, diet, exercise, relationships, parenting, work, and more.

Hosting live chats is her favorite part of the role.

“I feel like I’m helping myself 16 years back when I didn’t know anyone with MS or what to do or what a relapse even was,” she says.

“Although things are explained to us at the doctor’s office, we are so overwhelmed with all the information and change that it’s hard to let that reality sink in until you talk to other people with similar experiences,” she explains.

She also enjoys building real friendships via the app.

“I have a lot of messages back and forth with people and I have established long-term relationships with other MS patients. It’s hard to find other moms with MS, and it’s amazing to have someone who understands the chaos of having little kids,” says McLachlan.

Finding her voice as an advocate

Getting involved with Bezzy MS motivated her to become an advocate for MS in other ways, too. She recently became interested in regenerative medicine and is participating in a clinical trial for a remyelination drug.

“I received 12 infusions and am now in the stage where they monitor me for 6 months. I’ve noticed some improvement, but I don’t know if I’m on placebo or not,” McLachlan says.

She was invited to speak on the NoStressMS vlog to talk about her experience with the clinical trial, and as a result people began reaching out to her to discuss clinical trials they were part of.

“I started a Facebook group called Remyelination — Reaching for the Possible in Multiple Sclerosis, so people have a place to compare and contrast their experiences while participating in trials,” she says.

How helping others has helped her

Together, the Facebook group and Bezzy MS app have changed the way McLachlan perceives herself.

“When you are a patient, you get used to taking information from your doctor. They tell you what to do and you listen. That can be passive in a way,” she says.

While she’s not a doctor, as an ambassador, McLachlan appreciates giving and receiving information, resources, and personal experiences with others who are living with MS.

“That’s very empowering and changes my perspective as a person with MS. I don’t have to just take help from people, I can give help as a well,” she says.

Article originally appeared on August 25, 2020 on Bezzy’s sister site, Healthline. Last medically reviewed on August 25, 2020.