117/365 – Sex and myasthenia gravis

This is a difficult post to write as I know a large number of the people who read this blog are friends and family. Still it would be remiss in a blog about living with myasthenia not to discuss how it affects sexual relationships and how having MG feels for a sexual being.

Physical symptoms

Let’s focus on the mechanics of sex first of all. Regardless of what your preferences are, the muscle weakness and fatigue associated with MG can affect performance in the bedroom. In any kind of repetitive motion, MG muscles can get tired, shaky and easily cramp. Sometimes it’s very clear from the start that you are not going to be able to keep up a certain position or motion. When it becomes more about trying to hold a pose than enjoying the moment that’s when you need to be assertive.  Other times the weakness can come out of nowhere – there have been times when I’ve felt like my arms or legs would suddenly give way. While this can be part of having intense sex for anyone, it is the lack of control over your muscles that feels frightening. 

Saying this, I have never had to say no to anything because of myasthenia. Knowing your body’s limits is important when it comes to sex, but don’t be afraid to step outside your comfort zone. Once again, listening to your body is vital.

Communication

Communicating how you are feeling is vital for people with myasthenia when having sex. No matter if it is a one night thing, a casual set up or a long term relationship, respect yourself and your body enough to be open about how you are feeling. If you are struggling in a certain position, suggest something else. Certainly from my own experience, sex is much more rewarding if both parties are equally enjoying themselves. Don’t be a martyr – speak up about what is working for you and what isn’t.

Vision

While it can have less impact than more general physical symptoms, issues with vision caused by myasthenia can affect sex. For instance I often joke when suffering double vision that I’m going to bed with two women. My way of making light of the fact that I would have to close one eye to see which version of Elaine to pay attention to. 

Emotional impact of MG on your sex  life and drive

So here’s the difficult part – the emotional side of how MG affects you as a sexual being. I’m sure I’m not alone in this – I enjoy sex less when my symptoms are bad. If my eyes are looking bad, I hear a voice telling me not to look into my partner’s eyes as it might turn her off. When my voice is affected, I’m less likely to talk in bed with the fear that it will come out slurred or lisping (again putting her off). I’m worried that my chest scar is all she sees. In spite of the fact that I’ve had nothing but loving reassurance from my other half, I do struggle.

My confidence is dented, however it is much better now than it was when I first had symptoms. This is because I’m very lucky to have a partner who makes me feel sexy and I make an extra effort to make myself feel that way. How do I do this? I look after my body, I make an extra effort to ‘get in the mood’ and I try to shut down the voice that wants to ruin my sex life. I tell myself that I deserve whatever kind of sex I choose, within legal limits, and I fight the mood killing myasthenia woes. 

If I was not with my partner it would definitely be more of a challenge to shut those voices down but I would keep fighting to do so. I firmly believe you shouldn’t let anyone else define how sexy you feel nor should you let myasthenia stop you having a healthy, happy sex life. 
 


4 thoughts on “117/365 – Sex and myasthenia gravis”

  1. Hi I too have MG and I find that you hit the nail on the head! My husband and I are the same way. You are so cute about it. He is so sincere in how he makes me feel and I have to turn off the voices. I find that I am more fired up and desire sex more than he does now however my body cannot always handle what I want, LOL. We have to plan how often we can based on what I can handle physically and still recover from, LOL no need for crisis mode. I have just started blogging about my MG and glad to know I am not alone. You Rock!

    1. Aww thanks for the comment. Was quite a difficult blog to write but I feel it is an important issue to address. Feeling like I’m still able to be a sexual being is so important, but, like you, knowing my limits is not always easy 😉 So glad you and your husband can have such open discussions about it and have found a ‘system’ (for want of a more sensual word) that works for you both. Would you mind posting a link to your blog as I’m always keen to read about others experiences with MG?

      1. I will be writing more about my experiences with this as well. I just started blogging on this level. I started ‘journaling’ at dailystrength.org and now I blog https://myastheniagravisladycas.wordpress.com/ we have to be open as this all started 2 weeks before our wedding and has become a central part of our lives! Communication is more important with this than in normal relationships, lol

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s