Living With Multiple Sclerosis: How Jenna Green Became an Advocate
Key takeaways:
Jenna Green was diagnosed with relapsing-remitting multiple sclerosis (MS) at age 31.
There is no cure for MS, but drug therapies can help improve quality of life.
Jenna has become a vocal MS advocate and is working to reform laws that are not based on the patients’ best interests.
At 31, Jenna Green was in the best shape of her life. She was exercising regularly and doing a good job managing some chronic pain left over from a car accident a few years before. She had a husband, a house, and a dog. And her life in Boston felt together.
When she had to have her gallbladder out in fall 2015, it barely phased her. “It was very routine. I didn’t even spend the night,” Jenna says.
But 2 weeks later, she was overcome with vertigo, as well as optic neuritis in her left eye. She had trouble seeing and felt like the world was spinning. She also had pain, tingling, and numbness in her arms.
At first, she blamed her symptoms on the car accident. But when they didn’t improve after about a day, she went to the emergency room. “The doctor said to go home, drink more fluids, and follow up with a neurologist if I didn’t feel better.”
Jenna followed the advice and got an appointment with a neurologist. “When she looked at me, I knew it was more serious than I had allowed myself to believe.” A follow-up appointment in January 2016 with a multiple sclerosis specialist at Beth Israel Deaconess Medical Center confirmed that she had MS.
“I had done an MS walk the year before, but I didn’t know anything about MS,” she says. “I was in complete denial until the neurologist said the words, ‘You have MS.’”
MS diagnosis leads to advocacy
Jenna was diagnosed with relapsing-remitting MS, which means that her symptoms flare and ease. In the weeks after her diagnosis, the optic neuritis went away. Soon after, she had trouble walking with her left leg, but that subsided.
In the 6 years that have followed, she’s learned that MS can show up as many different things, such as muscle spasms and chronic fatigue. It has also caused her to have dystonia, which involves involuntary muscle contractions and tremors.
She has learned about what can cause her symptoms to flare, like stress, fever, or illness. But finding the right medication has been key. Just after diagnosis, Jenna and her neurologist settled on a disease-modifying medication that she would receive via infusion every 4 weeks.
But then on the day of her first infusion, Jenna found out that her insurance company had denied the drug.
“They basically said, you need to try this much older, statistically less effective medicine and have it fail first, before we will pay for this better treatment,” Jenna says. The side effects of drug failure included things like brain damage and increased disability. Jenna says it wasn’t a patient-first policy, and it enraged her.
“That was the day I decided I would step up and be an advocate,” Jenna says. She went ahead with the treatment without the insurance approval. She recognizes this was very risky and not financially sound. But she also had a neurologist skilled in the appeals process, who fought it with her and ultimately got it covered.
Jenna says she realizes her privilege in the situation. Not only was she receiving excellent care at a top hospital, but she also had access to resources. Not everyone is so lucky. “I realized that so many people aren’t educated about how to appeal and fight,” she says. “I became an advocate, almost by accident.”
Encouraging others to share their MS stories
Jenna has stepped further into advocacy after learning about the laws that govern how insurance approves drugs for certain chronic conditions. She posts about it on her Instagram account and has worked hard to educate both herself and others about how the system works.
“There are a lot of things I can accept about the unknowns of my disease. But the one thing I can’t accept is that a medication that is working for me, or working for someone else, is arbitrarily taken away,” she says.
She volunteers for the MS Society on the government relations committee. And she has testified several times at the Massachusetts State House on behalf of bills that affect people with MS.
Jenna has testified at the Massachusetts State House as an MS advocate.
Her day job includes running her strategic marketing consultant business, so she knows how to use storytelling to make an impact. In fact, she recently won a HealtheVoices Impact Fund grant to create a series of YouTube videos to help people with chronic conditions be more comfortable with public speaking.
“Not being comfortable with public speaking prevents a lot of people from doing more advocacy work. It can be hard to tell your personal story,” Jenna says. “I also talk about things like what happens when you have to testify and you are having a high fatigue day,” she says.
Jenna is motivated to continue in her advocacy work because of the feedback she continually gets from others. People tell her that her work and her stories make them feel less alone. “I share because I want to change public policy and show lawmakers how important it is that we have productive change for the most vulnerable members of society.”
Prioritizing her health and managing her MS symptoms
“You can’t tell someone’s health by looking at them,” Jenna says. “I have what I call a ‘dynamic disability.’ So most days, my disability isn’t visible. But there are days and times when I need to use a cane and that makes my disability more clear,” she says.
She has several ways she manages her symptoms. Quarterly injections for her muscle spasms help. Whenever she feels good, she works on stretching and takes walks with her dog.
Jenna also does yoga, but laughs because she can’t count how many times well-meaning strangers have told her “you should try yoga.” Ditto for diets. “I try to eat a low-inflammatory diet, but there is no one diet that helps,” she says.
She also says that she uses a combination of Western medicine, holistic healing modalities, and mindset exercises to help with her symptoms. And she makes it a point to spend time doing things that make her happy. Right now, that includes her new puppy, Callie, a 7-month-old rescue whom she calls a “tornado of joy.”
Since her diagnosis, she has gotten divorced. But she has great family support in her parents and in her sister and brother-in-law. As part of her business, she also coaches small business owners. Working for herself gives her the flexible schedule she needs, especially on days when her symptoms flare.
“I have a lot of hope for my future and for the future in general,” she says. “I have to hold on to hope, especially on those tough days.”
Jenna 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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