As one concerned boyfriend of a Myasthenia Gravis patient once noted on an MG forum, there is not a lot of information out there about how myasthenia can impact a person’s sex life. To be fair, MG manifests in a variety of different ways depending on the individual, so to write something that would be relevant to every patient is nearly impossible. Especially if you go into specifics.

However, we at FineMeCure will attempt to cover the topic in a mindful and respectful way, although not necessarily in an exhaustive manner. There is much to be said about sex after myasthenia diagnosis but we couldn’t possibly provide valuable insight into every patient’s specific case of MG. So, leaning on the side of generalization, we’d still like to offer you some things to consider.

Myasthenia can change your body

While yes, every patient experiences MG in a slightly different way than the next one, both myasthenia gravis and the treatments available for it can change the way your body looks and feels. You need to be aware of that and make peace with it before you get undressed for someone else.

Retha De Wet is not the only one who reposts gaining weight on medication for MG. Her experience is far from unique and you too could find some solace in her writing and in the knowledge that you’re not alone in this if myasthenia drugs have altered your body. Some forms of myasthenia can change a person’s facial expression, limit their ability to emote or give them drooping eyelids that they have a hard time accepting.

Not to be a broken record, but finding within yourself the capacity for self-love and acceptance is the first step to letting other people love you too. Try to reframe these new changes and give them a neutral meaning. Body positivity can be hard when your body looks nothing like what popular culture considers to be desirable. And being grateful to your body can sound like a bitter joke when you feel betrayed by it – you don’t have the strength to be active or even just get out of bed sometimes. But your body is just your body and it’s here to carry you through life, and it doesn’t have to be in top shape all the time for you to experience the joys that come with simply being alive. At the end of the day, being able to enjoy the company of your loved ones or even just the feeling of the sun on your skin can be enough. Embracing the fact that there will be good and bad days is not just part of dealing with a chronic disease but also a part of living.

Self-esteem might drop

Retha, as she herself admits, used to be proud of her figure, which she kept in shape with training and staying physically active, but when prednisone, a drug used to treat MG, changed that, she had to find new things to base her value on. Retha figured out after gaining weight that the people who loved her and stayed in her life did so because of who she is as a person, not because of her appearance.

Pop culture, magazines, movies, TV shows, music videos seem to suggest that ‘sexy’ is about the size of your waist or how clear your skin is, or how fit and toned your body is. As many people who look nothing like the girls and guys on MTV can tell you, sexy is so much more than skin deep.

Disease or no disease, you are a sexual being and there are many ways to express that even if you struggle to accept your body. Find things to appreciate about yourself and keep in mind that there’s such thing as secondary attraction – the attraction you feel for someone, once you get to know them and see all of their sexy inner qualities.

If you need your partner to reassure you, that’s perfectly normal. Find a way to communicate it and create a space where you can share your insecurities. Ultimately, being open and honest about the way you feel is the best possible foundation for healthy sex life.

Plan ahead of time

You know your body best. If you feel tired in the evening and you can’t even imagine snuggling, you might want to let your partner know that, so they don’t feel rejected when you’re not in the mood evening after evening. Spontaneity is great and it can be sexy, and you can still enjoy it on a good day but ultimately, staying connected is about scheduling time to be intimate both in and outside the bedroom. No good relationship can solely rely on spontaneity.

Address your concerns with your doctor

It might feel embarrassing to open a discussion about your sex life with someone who is essentially a stranger (though a good doctor shouldn’t feel like a stranger) but you will receive the most accurate information from a specialist. You can even opt out of having a face to face conversation by writing down your questions on a piece of paper or sending them an email. Remember to not only ask them about how MG can impact your sex life but about the effect your medication can have on your sex drive. Sometimes patients think that it’s the exhaustion and fatigue of myasthenia that makes them uninterested in sex when in fact some drugs can affect your libido.

Counseling can help  

If you and your partner can afford it, couples therapy can be a game changer for your relationship. Giving you the necessary tools to express yourself, counseling can dramatically improve your communication. Not only that but it can help you reframe your challenges in such a way you’re actually more likely to team up against them.

For example, if myasthenia symptoms are so severe most days that sex is completely out of the question, together you can find other ways to stay connected and foster intimacy. A good counselor should be able to help you put less pressure on sex and approach your sex life with more easefulness and fewer expectations. Sex doesn’t always have to be a vigorous passionate activity to ‘count’ and it doesn’t mean anything about you as a couple. You might need to shift your mindset to allow for imperfection – a chronic disease can be a blessing in disguise in this regard. The more accepting of your circumstances you are, the more peace and joy you make space for.

If the medication you’re taking is significantly impacting the quality of your life, you might want to ask your doctor for a substitute. And if no treatment so far has been able to put your symptoms under control, you should know that there are alternatives in development. Go through the clinical trials you can search for on FindMeCure and discuss them with your treatment team – a drug in development might be an option for you.


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