Hi. I’m Carolyn. I’m the editor in chief of SELF and the host of our wellness advice podcast, Checking In. In this week’s episode, we’re talking about opening up about your chronic illness, and getting the support you need, both at work and from your loved ones.
Today we’re hearing from Sophie, who was diagnosed with multiple sclerosis (MS) right before the pandemic hit early last year. “It’s still pretty new for me,” she says. She tells us that the people closest to her know about her diagnosis, but that she’s worried about sharing the information with others because she doesn’t trust that they’ll react appropriately or fairly. “What I’m realizing is a lot of people don’t really understand MS. I’m worried that people might associate negative connotations with what I can do with my work,” she says. “To let that information out without any sort of context I think could potentially be damaging, long-term, for my career.”
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There are nearly a million people living with multiple sclerosis in the United States. When you have MS, your immune system attacks your own central nervous system. An MS diagnosis is life-changing, and can be really scary. There are some medications and therapeutic methods that can help, which can slow it down and help control symptoms. But there isn’t a cure.
A lot of people are able to keep symptoms and attacks at bay for a long time, but it can worsen over time, too. An MS attack, also referred to as a relapse, can include visual disturbances, muscle weakness, trouble with coordination and balance, sensations such as numbness, a prickling that feels like pins and needles, and cognitive and memory challenges.
Our listener, Sophie, is dealing with so many aspects of living with MS—the physical symptoms, processing a new diagnosis, navigating shifts in her mental health, and navigating her relationships on top of it all. It’s a lot to process all at once.
And communicating her needs through all of this, especially in relationships with others, can be really, really hard. There’s so much to talk about when it comes to MS, but in this episode we focus primarily on the social stuff: when to disclose, and how to ask for help from your friends, family, and the people you work with.