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 dating and relationships when you have a chronic illness.
In today’s episode, a listener named June calls in to tell us that she’s having trouble sleeping next to her partner. She has sleep apnea, a common illness—but that’s not exactly what’s keeping her up. She tells us that she’s actually feeling anxiety over the fact that she uses a CPAP machine at night to help treat her sleep apnea. “Being diagnosed with something chronic like that, it takes a hit on the ego, you know,” she says. “It’s embarrassing! When you go to bed with your partner, you want to look nice. You want to look sexy, and wearing a nasal mask… It’s not a good look.”
June tells us that she sometimes waits for her partner to go to sleep first, before she does, so she can put the mask on without her partner seeing. She also says she feels bad because she’s worried that she’s a burden to her husband. “Having to rely on a machine possibly for the rest of my life—it feels like it’s also burdensome on him,” she says. “When you get married, it’s in sickness and in health. So this is what you’re going to be dealing with for the rest of your life?” She wants to know how she can feel better about the situation.
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June’s question isn’t really a question about sleep apnea at all. It’s actually a question about relationships. And chronic illness. And navigating lifelong illness in a world that’s often pretty hostile toward chronic illness and other forms of disability. She’s asking, How do I come to terms with my new reality? And also, How can I take care of myself without feeling shame? You know. Pretty heavy stuff.
I first reach out to Morgan Greene, who writes the blog Is, Was, Will Be about living and thriving with chronic illness. Morgan writes about her experiences with Myasthenia Gravis, or MG, which is a rare autoimmune disease that affects muscles responsible for basic functioning, like chewing and swallowing, talking, breathing, and walking. Morgan started her blog four years ago, when she was first diagnosed with MG. Because she found that there wasn’t a lot out there that talked about her particular illness or the experiences of women of color with chronic illnesses.
Morgan gives June a ton of really helpful and empathetic advice, from the perspective of someone who’s been there before. “If I’m feeling embarrassed about my illness symptoms or things that are just beyond my control, one of the things that I find is helpful is to speak to myself, as I would another person that I loved,” she says. “So if your partner was the one with the CPAP, would you look at him funny? Or judge him because he had to use the machine? Or would you show him more compassion?”
I also check in with Sari Cooper, LSCW, a sex therapist and founder of the Center for Love and Sex in New York City. While a lot of the couples she sees come in for sex-related disorders and problems, she also has decades of experience with couples who just need help communicating about a whole bunch of other things, including struggles around chronic illness.
I ask Cooper for some concrete strategies for managing shame and embarrassment over a health condition in a relationship. The first step, she says, is helping her patients learn to be nicer to themselves. And to recognize when they’re spiraling.
Ultimately, the most important takeaway from this episode is that living with a chronic illness is a part of life for many, many people, and that whatever shame you might feel from it is reflective of a cultural stigma and bias against illness and disability. It certainly doesn’t mean you’re not just as worthy of love as anyone else. And it doesn’t mean that you can’t get to a place of self-acceptance and allow yourself some grace, whatever your specific health condition may be.
If you’re interested in learning more about any of these topics, here are some articles from SELF you might enjoy:
My Chronic Illness Completely Changed the Way I DateLife Hack for People With Chronic Illness: Write an Elevator Pitch. Here’s Why.For People With Chronic Illness, Social Isolation Is Nothing NewI’m a Scientist With a Chronic Illness. Here’s How I’m Taking Care of Myself Right Now.I’m Furious That It Took Almost a Decade to Diagnose My Chronic PainI Have a Rare, Chronic Skin Condition, and I Went to Questionable Lengths Looking for a Cure
9 Signs You Might Have Sleep Apnea7 Reasons You Might Wake Up Gasping for AirHow Many Times Is It Normal to Wake Up at Night?Why Do I Wake Up With a Headache Every Morning?What Does It Mean If You Fall Asleep Instantly Every Night?