Little has been published about the relationship between physical intimacy and myasthenia gravis (MG), but this important topic may be on the mind of many people who live with MG. We interviewed a well-known sexuality educator and his colleague, a professor and author, who lives with myasthenia gravis, to help start the conversation. Please note that this article contains mature content.
In your opinion, what’s the biggest barrier for people with myasthenia gravis in intimate relationships?
A major barrier may be silence or a lack of communication. Many people who have a chronic condition like MG lack people to talk to about physical intimacy, including sometimes their partner or doctor. Intimacy isn’t an exact science; it’s primarily social and interpersonal. We can’t read each other’s minds, so communication is key. It’s important to set realistic expectations with each other.
Talking to your doctor is a start. I also recommend turning to friends or family members whom you trust. Get different opinions if you’re struggling with something. In my experience, most people are okay with having this type of conversation.
We all have questions, interests and priorities when it comes to intimacy, so there really isn’t one ‘right’ answer to most of our questions. This is why getting different input from trusted people in our life can be invaluable. It can help us start to understand what matters most to us and even how we can begin to work toward more intimacy or a different type of intimacy.
Chloë: Agreed. Many couples are uncomfortable talking about intimacy, and some people never talk about it. Living with MG may worsen this issue. How do you tell your partner that you’re feeling weak or tired during physical intimacy? Or that you’re feeling less desirable because you’ve gained weight?
Personally, I’ve never had a doctor ask me about intimacy, so talking to your care team should be a first step. But you could also consider going to a couples therapist. I encourage people to think broadly about intimacy and not rely on a single source for ideas and information.
We can’t read each other’s minds, so communication is key.
Intimacy can be awkward or hard to talk about in any relationship. What tips do you have for broaching the subject with your partner?
Cory: If you’re nervous talking about intimacy, practice on your own. Talk to your mirror or to your pet. Sometimes just saying the words out loud may help. Or you may want to start the conversation in a small way, such as by saying, ‘We should talk about intimacy’ or ‘Can we have a conversation about intimacy?’
It’s helpful to ground these conversations in love and joy when possible. You may want to start by sharing something you love and value about intimate relationships, even if that isn’t part of your relationship yet. It’s okay to discuss this, but if your partner responds, ‘No’ or ‘I’m not ready to talk about this,’ you may want to give it some time and space before bringing it up again.
For some people, it’s sometimes easier to express themselves through a letter, email or even text. But no matter what mode of communication you choose, give your partner a heads up so they aren’t completely surprised by your messages.
Chloë: When someone has a partner along on their MG journey, both of them may greet a myasthenia gravis diagnosis with a sense of relief because they’ll know what’s wrong. However, it may be a different or more complicated matter for those living with MG who are single and starting a relationship. Because they make look ‘fine,’ some new partners may not fully understand. It may take disclosure, time, patience and repetition for true understanding to take place.
Depending on the extent of one’s myasthenia gravis symptoms, certain parts of intimacy may not seem feasible. What other ways can physical intimacy be achieved?
Cory: It’s sometimes helpful to redefine ‘physical intimacy.’ The function of intimacy is to feel physical closeness and connection with someone else, which can be achieved in many ways other than intercourse.
One exercise I suggest is doing a ‘body scan.’ See what other areas of your body feel good. Maybe it’s your eyebrows or earlobes. Romantic and physical intimacy is not always genital-focused. There are a lot of places that can feel good.
Patty Berne, a disability activist and artist, once said that ‘there’s no wrong way to have a body.’ When it comes to intimacy, people with MG are worthy and capable of pleasure. You can find ways to explore intimacy—there’s so much that is possible. It’s often about telling ourselves that we are worthy of intimacy, love and pleasure. We have a right to feelings of intimacy.
It’s often about telling ourselves that we are worthy of intimacy, love and pleasure.
What’s your message to anyone in an intimate relationship with someone who has MG?
Chloë: It’s important to know that even if intimacy does become less frequent or less spontaneous, it may become more meaningful. Physical intimacy goes through phases and cycles. You may have periods of intensity and periods of inactivity because of health issues or stress. But intimacy can reawaken. Just go with it.
Cory: If you are a supporter of someone with MG, you may need your own support, and you are worthy of support. When you are providing care to your partner, that’s loving but not necessarily romantic or intimate. To switch from cooking, cleaning and childcare to having a romantic time can be challenging, but it can be done. Again, it starts with honest communication, both with your partner and others.
Caregivers may carry so much alone. We often think of a supporter as an angel, but that may create the expectation that they’re not allowed to have feelings and needs of their own. All of your feelings are valid. The big takeaway for caregivers is that they should find an outlet and someone they can trust to talk to. The person may be an old friend, a relative, a leader in the community, or a local support group for caregivers. It may take some searching to find the right person, but they are out there. We all need and deserve support.
Physical intimacy goes through phases and cycles.
Any final suggestions for people with MG when it comes to intimacy?
Chloë: Experiment and find out what works best for you. For example, you may decide to be intimate in the middle of the night, when you’ve both had a few hours of rest and know you can go back to sleep.
In my experience, people living with myasthenia gravis should expect the unexpected. Your body is going to feel different. It’s helpful to communicate with your partner and adjust for it. Try to see open communication about intimacy as an opportunity. It may allow for greater self-reflection and moments of honesty. MG can push a relationship to accept weaknesses and differences, which, honestly, can be a gift.
Cory: Try to keep a sense of humor. Sexuality can be weird and goofy. We fumble around in the dark. When your relationship with your body has changed, and you’re living with MG, things may not always seem funny. But having a sense of humor may make it easier to try new things. If you try something out and it doesn’t work, that’s fine! It doesn’t have to be the end of it. You can always take a break and try again later.
This is where I see people struggle. People think, ‘Well that wasn’t that much fun,’ so they put it away and don’t try to be intimate again for six months or a year. Try not to beat yourself up. If you want it, you can find a way to have intimacy, no matter how you define it. You may also want to speak to your healthcare provider if you have questions.