Episode 132: Sex and Autoimmune Disease with Kate Wolovsky

Rediscovering Intimacy

Sexual intimacy can be challenging even in healthy couples. It’s an area that many of us aren’t comfortable talking about, but when you add chronic illness, the obstacles increase exponentially. Depending on your condition, you might be experiencing extreme fatigue, chronic pain, limited range of motion, muscle spasms, disability, bowel issues, skin conditions, and more. It’s natural for this to have an impact on libido, body image, and relationships. My guest, Kate Wolovsky, is a mental health counselor who specializes in the intersection of disability and sexuality. She also has multiple sclerosis herself, and her husband is disabled as well. In today’s podcast, she helps us break through taboos to talk about sexuality openly, sharing both her personal experience and professional advice.

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Show Notes

• Intro (0:00)
• Thank You to our Podcast Sponsor – Paleo on the Go (2:00)
  • A frozen meal delivery service, 100% of their menu is compliant with the elimination phase of the paleo autoimmune protocol (AIP). They have over 5o items, including entrees, side dishes, broth, AIP-friendly bacon, and desserts.
  • Use the code PHOENIX for 10% off your first order.
• Kate’s Personal Healing Story (3:15)
  • Kate has multiple sclerosis and lymphocytic colitis. She first started experiencing symptoms in her teens, but wasn’t diagnosed until her late 20’s. When her symptoms were at their worst, she was a wheelchair user and experienced bowel incontinence, urinary hesitancy, brain fog, mouth droop, spasticity, intermittent blindness from optic neuritis, heat dysmorphia, and pituitary impairment that caused her to go through menopause at age 29.
  • She’s now 38 years old. She started implementing diet and lifestyle changes immediately after diagnosis, but finding the Wahls Protocol in 2013 introduced some key elements she was missing: healthy fats and a diversity of colorful vegetables. Her improvements came slowly, but eventually led to dramatic changes. She no longer needs to use a wheelchair daily. Instead, she only uses one to traverse long distances (like the airport), or if she’s spending a full day outside in the heat. She’s experienced a major reduction in pain. Her brain fog cleared and she was able to return to school. Her energy levels have increased to allow her to live a full and vital life. And she has been able to return to work as well.
• Kate’s Professional Background (12:49)
  • Kate is a marriage and family therapist, sex therapist trainee, disability consultant, speaker, and researcher. Her website is Disabled Duo.
  • She and her husband also teach at Dr. Terry Wahls’ annual seminar.
  • When her health was at its worst, she still approached life with a positive attitude. Many people asked her to do peer counseling for others who were struggling with chronic illness. But she noticed it was usually other people who asked for help on behalf of the patient (doctors, friends, partners, relatives). There was a clear gap in understanding between the person experiencing the illness and the people in their lives. Kate experienced this gap herself. When she was first diagnosed with MS, her sex drive disappeared. She also experienced allodynia – when all touch is painful. She and her husband struggled to find ways to connect, and eventually amicably divorced. (Kate is remarried now). Her experiences both personally and as a witness to others inspired her new career.
• Why Is It So Hard to Talk About Sex? (18:23)
  • There’s a lot of shame surrounding sexuality, both conscious and unconscious.
  • It starts with language – instead of using accurate names for genitalia with children, we commonly use nicknames or simply say “down there”.
  • Many spiritual and religious traditions have strict rules surrounding sexuality.
  • Sex education in the schools usually excludes all talk of sexual pleasure (at least in North America). Instead, it focuses on anatomy and sexually transmitted diseases.
  • The media presents unrealistic images of what constitutes a “sexy” body and even what sex is supposed to look like as well.
  • Lastly, healthcare professionals rarely receive any training on human sexuality. This includes medical doctors, alternative healthcare practitioners, and mental health counselors. So sexuality is rarely discussed with patients, even by the professionals that are meant to help us live our fullest and healthiest lives.
• Where Kate Begins the Discussion with Clients (21:40)
  • Emotions and sexuality are intertwined, and many emotions come to the surface when discussing sexuality.
  • The first question Kate asks her clients is: “What is sex?” Because if sex is defined only as penetration, it’s missing a lot of what goes into a healthy sexual connection.
  • Next, she talks about the idea of consent. Consent begins with you, asking your body if it’s ready to be intimate. And with chronic illness, every day is different, which means consent needs to be continually asked, even within long-term relationships.
• Baby Steps to Intimacy (24:21)
  • When you aren’t ready for penetration but would like to be intimate with a partner, where to begin?
  • The goal is always to nurture connection, to yourself first, and then to others.
  • Masturbation can be a wonderful way to discover/rediscover your body and sexual pleasure. If this idea is intimidating, Kate recommends that you simply begin by touching your hand and asking yourself what types of touch you like. With autoimmune disease, the mental/physical/emotional landscape changes daily. We can’t communicate our sexual needs and desires to others if we don’t know what those needs are. It’s a gift to your partner(s) to have this knowledge and be willing to share it. Kate recommends that everyone become comfortable exploring their own bodies, especially anyone who identified as female at birth, since culturally masturbation is often seen as more acceptable for men than women.
  • When it comes to connecting with your partner(s), a beautiful way to begin is to look them in the eyes and smile. This activates mirror neurons in the brain that signal a feeling of safety. It’s the opposite of the fight/flight/freeze stress response. Instead, it taps into the relaxation response of the vagus nerve which is connected to all our vital organs, including our genitalia.
• Baby Steps to Talking About Sex (29:52)
  • If you aren’t ready to talk to your sexual partner(s), begin by talking with friends. Get used to the language of sexuality and explaining what’s happening with your body.
  • When you’re ready to talk to your partner(s), create space for the conversation. Don’t try to squeeze it into a random moment. Begin with eye contact and smiling, to nurture a feeling of connection and safety for the conversation.
  • If it’s especially difficult, consider working with a sex therapist who specializes in helping people with chronic illness.
  • Listen to this podcast together as a springboard to talking with each other. Here are some other podcast interviews Kate recommends:
    • Disability After Dark Ep. 143: The Disabled Duo – Kate & Aaron Wolovsky.
    • Sex Ed In Color Ep. 7: Coming Out as a Chronic Pain Babe.
• Thank You to Our Podcast Sponsor: Simply AIP (33:49)
  • Update 2023: Simply AIP is no longer in business, but you can find AIP products at Fully Healthy.
• Adapting Sexual Intimacy Around Physical Symptoms (35:24)
  • A sense of humor can help dispel some of the awkwardness and tension that comes from having these conversations for the first time, as you explore new ways to be sexually intimate.
  • Spontaneity might not exist in the same way it has in the past, but the physical preparations for comfortable sexual experiences can become a new kind of foreplay.
  • Begin by expressing your desire to be intimate, so your partner knows that you want to be with them. Then, explain your symptoms and what sexual acts aren’t possible right now, and brainstorm together which ones might feel good.
  • Chronic Pain: Pillows, bolsters, rolled up blankets, etc. can all help support comfortable positions. Being intimate can also be pain-relieving: orgasms and sexual intimacy release natural opioids in the body. Also, your partner might fear hurting you, so being able to talk about what does and doesn’t hurt can help alleviate their fears and increase pleasure for both of you.
  • Fatigue: You may need to schedule sex – planning it for the time of day your energy is normally highest, and limiting other activities that day to reserve your energy. That said, symptoms can be unpredictable, so there always needs to be permission to say no and reschedule when necessary. In fact, this permission can be an aphrodisiac itself because it inspires relaxation and trust, which supports connection. Also, sex can be energizing. You don’t need to be 100% fatigue-free to enjoy sex.
  • Incontinence: There’s a lot of shame surrounding bodily functions, and combining a conversation about urine or bowel incontinence with sex can be doubly difficult. Yet, it’s important. Explain that this is a possibility during sex, that it’s not your intention for it to happen, but you don’t want it to be an obstacle to sexual intimacy. This allows you and your partner to prepare. There are waterproof blankets available that are soft and comfortable and also protective. If incontinence does it happen, it doesn’t need to be a source of shame. For some people, it’s even a source of sexual pleasure. For others, it can simply be a neutral side effect of a pleasurable event.
  • Low Libido: It’s very common for people with autoimmune disease to experience low libido, and there are many potential reasons. Two common ones are fear and body shame. Fear that we’re no longer attractive, and shame that our bodies no longer look and behave the way society tells us is “sexy”. Working with a sex therapist can help us explore these issues. There can be physical causes as well: pelvic floor dysfunction, erectile dysfunction, anorgasmia, and others. Many times people aren’t aware there might a treatable physical cause. It’s worth consulting with a medical doctor, too.
  • While we didn’t have time to discuss every autoimmune symptom, the advice shared applies to all: get to know your body, become comfortable talking about your changing sexual needs, adapt techniques and environment to meet those needs, and when appropriate seek the help of professionals.
  • There are often feelings of shame surrounding our bodies and sexuality. A beautiful side effect of becoming comfortable with these conversations, is the release of some of that shame. Since shame comes with both stress and tension, this release benefits our health overall.
• Dating, Sex, and Autoimmune Disease (50:49)
  • When you’re single with autoimmune disease, it’s common to fear you’ll never be able to find someone who can “handle” your symptoms.
  • Kate and her husband were both experiencing significant disabilities when they met, and they had these fears.
  • The first step is feeling worthy enough, that you are attractive and have a lot to offer a relationship regardless of your chronic illness.
  • With autoimmune disease, many symptoms are invisible to others, so the next step is deciding when to talk about them with the person (or people) you’re dating. Usually, it wouldn’t be the first date. When you know you really like someone and want to get to know them better, that’s a good time to let them know more about you.
  • While it’s true that some people aren’t interested in dating someone with health issues, for others it’s not a showstopper at all.
  • Resource Podcasts:
    • Phoenix Helix Ep. 16: Young, Single, and AIP.
    • Disability After Dark.
• Sexless Intimate Relationships (54:11)
  • We are all sexual beings. It’s part of the human experience.
  • However, not every couple chooses to have sex, and that’s OK. It’s a personal choice between you and your partner.
  • Remember that sex isn’t always penetration. There are many expressions of sexual intimacy. Get to know your own body, and decide what experiences you do and don’t want to share with your partner(s). This podcast isn’t trying to tell anyone what they should or shouldn’t be doing. The choice is always yours.
• Finding a Qualified Sex Therapist (55:32)
  • The American Association of Sexuality Educators, Counselors and Therapists (AASECT) is also a great resource and they have a certified practitioner directory. Many other countries have similar associations.
• Outro (56:47)
  • You can reach Kate her through her website: Disabled Duo or by email: [email protected]. She works with clients in Monterey, California, through the Shine a Light Counseling Center. She also consults with professionals around the world, who want to start having these important conversations with their clients and patients.
  • Eileen (your podcast host) is the author of multiple books, written to help people thrive with autoimmune disease. Learn more on the Books Page.
  • If you like this podcast, follow or subscribe through your favorite podcast app. You can also subscribe to Eileen’s biweekly newsletter.
  • Check out the entire archive of podcast episodes.

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