Part 1: Sex With a Chronic Condition

When you have a chronic illness like MS, sex can involve a complicated mix of feelings, emotions, and practical considerations. A diagnosis can turn your entire world upside down – so activities like having sex with your partner may feel overwhelming, difficult, painful, or even lost to you.

MS between the sheets

Sex is still very possible when you have MS or any chronic illness. If you and your partner are willing to be creative and caring in your approach to physical intimacy, this important aspect of your life can continue – regardless of your diagnosis.

September is Sexual Health Awareness month and this is part 1 (of 2) of our series, Sex With a Chronic Condition. We had the opportunity to interview Lauren Dicair, a clinical sex therapist. We thank her for addressing all the questions we have about sex but might not feel comfortable asking. Let's dive in.

What is a sex therapist exactly?

A sex therapist is a psychotherapist who has a distinct specialty in supporting individuals and partnerships with their sexual health and the health of their intimate relationship(s). Some examples of concerns that we can address include challenges around sexual function (otherwise known as the sexual response cycle), sexual interests, sexual orientation, compulsive sexual behaviors, intimacy challenges related to a disability or chronic illness (including chronic sexually transmitted infections).

Sex therapists also focus on communication with one’s sexual partner(s), and concerns regarding the influence of past traumatic sexual experiences on present-day sexual intimacy and relationships.

What should people expect to happen if they decide to talk to one?

An initial session with a sex therapist typically involves taking a sexual and relationship history and assessing a client’s current concerns that they wish to address in sex therapy. Sex therapists do not make physical contact with clients but may provide behavioral homework exercises for clients to work on between sessions, when relevant.

How do you recommend people to stay positive about sex while living with a chronic illness?

One of the biggest reasons why people experience distress around sex is due to their internalization of society’s misguided and harmful messages about what sex should look like. One of the more popular ones is the equation of penis+vagina or penis+anus genital orgasm, and that anything else isn’t real sex or isn’t good sex.

The key to staying positive and finding sexual fulfillment is twofold: broadening one’s definition of what sex is and discarding the belief in goal-oriented sex.

Are there any tips on how to get started or how to get comfortable communicating your needs to your partner?

To engage in safe, healthy communication, it is important to consider the What, Where, When, and How. First, comes the what. Before entering into a serious conversation with your partner(s) about your needs, it’s important to first be clear with yourself on what your needs are. Take some time on your own to write out a list of your mental, emotional, and physical needs.

After making this needs’ list, you will then want to go through each item and either labels them as “musts,” meaning that you cannot compromise on that need, or, label them as “compromises”, meaning that you are able and willing to fully or partially sacrifice that need. By doing this exercise, you’ll feel more confident and prepared for what you want to say.

So what comes next?

Now we turn to the where. The best place to have a serious conversation is in person, face-to-face. If you and your partner(s) have a long-distance relationship, then having a conversation by video is the next best option. Texting, DMs, and E-mail are not good mediums through which to have serious conversations.

There can be a lot of context lost when you are not able to convey or read body language or vocal intonation, which can result in misunderstandings. Even communicating by phone is a poor option because it doesn’t allow you to see each other. Over 50% of communication is through body language.

Moving into the when. It’s best to have serious conversations when there are no distractions that will interfere with the flow of the conversation. This means scheduling the conversation at a dedicated, agreed-upon time when you will be alone in private, away from other people, away from social media, television, and work, with no strict time limit.

Finally, comes how you want to communicate the needs list that you created. There are three styles of communication – passive, assertive, and aggressive. Of these, the assertive style is the one that we all want to strive for.

What are some traits of an assertive communication style?

Assertive communication emphasizes the importance of every person’s needs involved in the conversation. During an assertive conversation, a person stands up for their own needs, wants, and feelings, while also listening to and respecting the needs of the other person(s).

Listening without interruption, clearly stating one’s needs and wants, being willing to compromise (where safe and appropriate), standing up for one’s rights, using a confident tone of voice and body language, and maintaining good eye contact with the other(s).

“I” statements are an important part of assertive communication in that they provide a structure for you to communicate something upsetting while minimizing the chances of the other person feeling blamed or judged. The format for an “I” statement goes like this: “I feel ____ when you _____ because _____.”

Assertive communication isn’t the default style that most of us are accustomed to using. To become more comfortable with it, you should look for opportunities to practice the verbal and non-verbal aspects of assertive communication in everyday mundane situations.

Are there any practices or exercises on what partners can do to regain lost intimacy?

When intimacy has been lost, it’s often due to a loss of fulfilling one another’s fundamental, interpersonal needs. Our fundamental interpersonal needs are to feel significant, to connect, and to be understood.

As time goes on in a relationship, it’s easy to slide into a routine of being around one another rather than being with one another which can result in the death of intimacy.

These days, everyone has their faces buried in their cell phones, tablets, televisions, or other electronic devices. Simply turning these off or putting them out of arm’s reach and redirecting your focus on that other human next to you is a simple but especially important first step.

Now, it’s time to engage all of your 5 senses to experience each other – sight, sound, touch, taste, and smell. Some people may have one or more of these senses compromised due to an illness or disability – if so, using the senses that are available to you will be just fine.

What would you suggest for those who cannot physically have penetrative sex but want to create intimacy?

Just simply experiencing each other through your senses alone is a powerful and necessary component of creating intimacy. It is so powerful, in fact, that I believe that from the moment you engage in sustained eye contact with your partner, before you’ve even engaged any of your other senses, before there’s even any genital stimulation, the two of you have already started making love, aka having sex.

Here is a grounding, intimacy-building exercise to try that involves all five senses. The only goal here is to build intimacy. If one or both of you become sexually aroused, great. But this is not a genital-focused or penetrative-sex-focused exercise.

Schedule a time with your/one of your partner(s) where the two of you will be able to dedicate at least an hour of sitting alone together with no distractions. You can either sit or lay down, facing each other. Next, you’ll want to meet each other’s gaze and maintain eye contact with each other. See how long that the two of you can keep silent while meeting each other’s gaze. This may eventually lead to laughing or talking, which is OK – just don’t avert your gaze.

Take turns telling each other what you notice about the other person’s eyes, such as their color and their shape. Then, pay attention to how it feels to have your partner look you in the eyes. Does it make you feel anxious? Loved? Insecure? Horny?

Additional tips to build intimacy

Tell your partner how it feels and let them do the same with you with no judgmental responses. Listen not only to your partner’s words, but also to the quality of their voice as they’re speaking. Is their voice deep? Throaty? High-pitched? Now, incorporate your sense of touch. Use your fingers to gently graze your partner’s hands or their cheek or their neck – any part of the body is OK so long as it is not the genitals.

Take notice of how their skin feels – is it smooth or rough? Warm or cool? Next, put your lips on the area that you were touching, gently using your tongue to re-discover the taste and texture of their skin. We all have our own personal scent – bury your nose in their skin -- what is their scent like? Is it sweet? Musky? Floral?

Now you can both use your eyes, touch, taste, and smell senses to explore the rest of each other’s bodies.
If you decide to focus on each other’s genitals once you’ve gone through this exercise, oral sex and mutual masturbation are genital-focused activities that don’t have to involve penetration.

Don’t forget to continue to honestly communicate aloud what you are feeling within yourself and about your partner as you explore each other. What feels good? Where do you wish for them to linger? Where do you want them to touch lighter or harder? This is also a learning exercise – you are learning about how to fulfill your partner’s specific interpersonal needs are.

For additional tips on comfortable positions and doctor communication, we invite you to check out part 2 of this article, here.