Jeannie Mai Jenkins, a TV host on syndicated talk show "The Real," kept her Aunt Linh's multiple sclerosis (MS) diagnosis a secret from her other family members, until her aunt was ready to tell them herself.
The neurological condition kept Mai Jenkins's aunt from being physically present at family events, like holiday gatherings — long enough to strain relationships with family members who assumed her aunt was being rude or cold, Mai Jenkins says.
Once her family became aware of her aunt's condition, they decided to change how they approached the holidays. Those taxing gatherings also influenced Mai Jenkins to get involved with Express4MS, a new campaign that aims to provide visibility into the journeys of people living with the disease.
The campaign is funded by EMD Serono Inc., a biotech company that manufactures two FDA-approved drugs for relapsing forms of MS and is owned by Merck KGaA, Darmstadt, Germany.
"It was critical [and] vital that we not only were a lot more patient and empathetic, [but] to just be there," Mai Jenkins tells CNBC Make It, adding: "Particularly with somebody with MS, even if they tell you how they're feeling one day, that doesn't mean they're going to feel the same way next week, the next hour, the next holiday."
Ultimately, her family made adjustments that could help people with conditions beyond MS, too. Here are Mai Jenkins's five recommendations for accommodating loved ones who are living with disabilities this holiday season, based on her own family's experiences:
- Check in with them a month or two before a holiday gathering, and ask what they'd like to contribute to the event.
- Give them options ranging from activities like cooking to simply showing up.
- Study their condition to learn their potential symptoms and what causes flare-ups, so you can help keep them comfortable.
- Remind them that you're there if they need to talk.
- Respect their boundaries, and understand that they may not be able to attend this year.
Those tips echo advice from the Centers for Disease Control and Prevention, which encourages these considerations for people with disabilities:
- Eliminate the idea that they're incapable of participating.
- Give them the same treatment you would give anyone else.
- Modify items and activities, so you can include them in as much of the gathering as possible.
"It's important for people to know, especially during the holidays, that loved ones with disabilities of so many different types can have a really hard time with things like loud noise, flashing lights, overlapping conversations, and overstimulation from things that can easily be taken for granted," says Mai Jenkins.
"If you have someone in your family who has a condition of any kind, keep this in mind," she adds. "And maybe reach out ahead of time."
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