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.
To help Sophie, I reached out to Lauren Selfridge, L.M.F.T., a psychotherapist based in San Francisco who mostly works with couples and people who want support with their chronic illnesses. Selfridge herself was diagnosed with MS several years ago, and living with MS has become a big part of her work. She says having MS has brought her a lot closer to what is really important in her life. And she works to help other people discover this for themselves as a creative-vision consultant and as the host of a podcast called This Is Not What I Ordered. And Selfridge has some incredible and empathetic advice for Sophie, and for anyone else working through a life-changing diagnosis, and everything that comes with it.
“I think the first thing is giving yourself the space to decide what feels good today and the permission to change your mind tomorrow,” Selfridge says. “Because it’s about honoring what’s actually happening for your life. There isn’t a rulebook. And we’re kind of writing it as we go. But even then, it can change.”
In this episode, Selfridge shares tips about disclosing at work, as well as advice about how to get the accommodations you need. And she also talks about how to handle your relationships with friends and loved ones who don’t quite know what to say. That’s something that Sophie says has been happening a lot in her life: “I almost feel like people sometimes feel uncomfortable, or they don’t know what to ask, or feel like they’re going to ask the wrong thing,” she says. She says that after she disclosed her diagnosis with some of her closest friends, they just didn’t bring it up again. Which made her feel really bad, even though she assumed it was because they meant well. “I think it was because they were trying to be careful and not do the wrong thing, but for me it was kind of like… Hey, I had this really huge thing happen. And to not address it ever kind of makes me feel as if I’m not being seen, if that makes sense.”
Selfridge says she can relate. And she shares some advice for Sophie about how to ask for what she needs from her friends and loved ones directly. The key, Selfridge says, is to understand what she needs in the first place.
And then there’s this: Not everyone is going to react well, even if you tell them what you need. Selfridge said that MS has become a “bouncer for her heart.” And that it’s okay to let go of some friendships that maybe don’t feel right as you change. “I won’t lie,” Selfridge says. “There are some friendships that may dwindle, and that’s okay, because there are relationships that will either strengthen, or new relationships that can be born out of relating to each other on a deeper level.” She recommends that anyone living with a chronic illness like MS might want to find a community of other people going through similar experiences.
If you, like Sophie, are learning to navigate life with a chronic illness, I hope that Selfridge’s advice and insights are helpful to you.
Show Notes
Lauren Selfridge, M.Ed., M.A., L.M.F.T., is a psychotherapist in San Francisco. You can learn more about her by visiting her website, and listening to her podcast.
You can learn more about multiple sclerosis here.
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