‘Multiple Sclerosis Doesn’t Discriminate’: Jeannie Mai Jenkins Is Advocating for Better MS Awareness in Her Community
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Jeannie Mai Jenkins brings her chic sense of style and "best friend energy" to everything she does—whether she’s covering red carpet events like the American Music Awards, working as a correspondent on TV shows such as the Today Show and Entertainment Tonight, or appearing in travel and lifestyle segments on her popular YouTube channel “Hello Hunnay.”
Never one to shy away from sharing herself, the 44-year-old former co-host of the Emmy-award-winning daytime talk show The Real is also a social media star with millions of followers and subscribers. Her appeal relies on a balance of humor and honesty—whether she’s giving fashion advice, sharing sweet moments with her husband and their daughter, or shining a light on topics she’s passionate about.
It's in this spirit that Jenkins is talking about an issue many of us may face at some point in our lives—what it’s like when someone you love has a life-changing health condition. Plus, what it's like when you may have missed or were in denial about the warning signs.
“There were so many moments now, looking back to before my aunt was diagnosed with multiple sclerosis, that I noticed,” Jenkins reveals. “I really want to help people learn from my experience, so they’re better able to support their loved ones.”
Jenkins shares with Parade how she and her aunt came to understand and accept her diagnosis—and how she’s advocating to make the process easier for others.
The Journey to the Correct Diagnosis
A big part of what makes Jenkins so relatable is the bond she has with her tight-knit Vietnamese family, including her beloved Aunt Linh. During holidays and weekend gatherings, Jenkins fondly remembers her aunt being an active presence, regularly taking charge of julienning vegetables, participating in light-hearted gossip and enjoying walks around the neighborhood with her niece.
When Aunt Linh's behavior began to change, Jenkins was concerned. “She started to step back from everything,” Jenkins recalls. “She was a little bit irritated if we would ask her to do things. She didn't feel comfortable on walks. She would tell me she was okay, but her energy was downtrodden, almost weary. And I would just go, ‘Okay…not sure what's going on with you, but I’ll leave you alone.’”
Jenkins wasn’t aware at the time, but Aunt Linh was on a journey of misunderstanding and mistreatment before she was properly diagnosed. “She went to several different doctors. Nobody knew quite what it was. She was taking the wrong medications and getting poor advice.”
Aunt Linh would eventually receive an accurate diagnosis: multiple sclerosis (MS), an autoimmune disease that affects the central nervous system. While some of the symptoms are physically noticeable—difficulty walking, muscle spasms, pain, numbness, tingling sensations and vision problems, others—fatigue, difficulty thinking—are not. What’s more confusing is MS isn’t the same for everyone that experiences it: some people have different symptoms than others, and intensity and duration can change and vary.
In Aunt Linh’s case, she learned she had relapse remitting multiple sclerosis (RRMS), which is experienced by 85 percent of people living with MS. In RRMS, recurring “relapses” followed by a period of recovery or remission occur—sometimes, symptoms disappear completely, sometimes they get worse or new symptoms are experienced.
It's not unusual for people diagnosed with life-altering conditions like MS to take a long time to not only come to terms with the news but to share it with the people closest to them. “I found out my aunt had MS long after she had it,” Jenkins says. “She went through a series of emotional transitions—discovering what MS was, figuring out that she was even feeling different things, accepting that she was diagnosed. All of this took almost two years.”
Breaking Down Barriers to Awareness and Understanding
Although MS is more commonly diagnosed in people of European descent, it can affect people of all ethnic backgrounds, including the Asian American Pacific Islander (AAPI) community. However, MS awareness campaigns in the past haven’t effectively targeted Vietnamese and AAPI populations—and that’s something that Jenkins would like to see change.
“MS doesn’t discriminate, and I want to speak up for those communities that feel ashamed about having a condition or being diagnosed with MS,” she says. “The Vietnamese community, or at least my Vietnamese family, didn't know where to take something like this. So it became, okay...should we tell other people? Should we kind of keep this to ourselves? Should we be quiet about this? And the truth is, no, MS is something that should be understood. If anything, it needs to be accepted."
Jenkins is also passionate about helping people with MS and their loved ones advocate for themselves—which is why she’s working with ExpressMS, a website featuring a "phrase generator" to help better describe their invisible symptoms. For example, “brain fog” may be difficult to define, but seeing it expressed as “getting my wires crossed” or “lost in space” can be more relatable and easier for other people to understand.
Related: Early MS Symptoms Doctors Want You to Know About
Jenkins’ Three Tips to Better Support Someone with MS
Life after an MS diagnosis can feel overwhelming, but there are things you can do to make the transition easier—for yourself and your loved one. Based on her experiences with her aunt, Jenkins offers the following advice:
1. Resist the urge to come to the rescue
Your gut instinct may be to rush in and micromanage their health issues—but it’s better to back off, warns Jenkins. They need space to come to terms with how the condition is affecting their lives and how they want to live with it going forward. “When Aunt Linh was properly diagnosed and put a name to her condition, she was able to get help and figure out for herself what it meant,” Jenkins explains. “She approached us when she was ready and said, ‘Hey, guys, I have MS: this is what it looks like for me, and this is what I need you all to do,’ and we realized that we needed to give my aunt her boundaries, respect how she needed to live her life and then join in as a community to be there for her.”
Related: Christina Applegate Reveals One Everyday Activity Is 'Frightening' With MS
2. Be an active listener and observer
“Stop just listening with your ears and really read the person and lean in,” Jenkins suggests. “Put a hand on their shoulder and say, 'Hey, how can I help?' That takes sensitivity. It takes putting a phone down. It takes being present. That was a big lesson to me.” One of the things Jenkins observed was that Aunt Linh was having trouble with her clothes: small buttons were becoming increasingly hard to navigate, and Jenkins was happy to put her fashion knowledge to work finding raised buttons so she could dress herself more easily.
Related: Actress Brandee Evans Is Bringing MS and Caregiving Into the Spotlight
3. Join a supportive community
For Jenkins and her family, connecting with other people online through the ExpressMS website was a lifesaver. “It’s a phenomenal community of people at different stages of their journeys with MS—from people who have been diagnosed and living with it for years to people like myself that are supporters of others that have MS.” The site also features updated information about MS, detailing everything from how symptoms and treatments to advice on talking with your healthcare team.
Supporting Aunt Linh is an ongoing process and one that Jenkins and her extended family feel better prepared to do now that they have the information and resources they need to move forward. “Life doesn't end when you have MS,” she explains. “It just changes. When you can support one another and be accepting, we can create an environment, a safe space, to share our stores and get the help we need.”
