Marriage, communication, and intimacy in life with MG

How well do you really know your partner?

Do you know their food or medication allergies? How about their favorite color? Can you rattle off the things that drive them nuts, both in a good and bad way? If they regularly take medications, do you know which ones? If they’ve been diagnosed with a chronic illness like myasthenia gravis (MG), do you know the intricacies of the disease?

How about their deepest desires?

The answer to that last question can take some time to really understand. I’ve been with my husband, Justin, for 12 years, and a conversation we had last week left me in awe of the things I didn’t know about him.

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Maintaining intimacy

Having a happy and healthy relationship can be hard enough without taking into consideration a chronic illness like MG. In many of my past columns, I’ve discussed the importance of having open and honest communication with your significant other. This is especially true where intimacy is concerned.

As my health has continued to improve thanks to an amazing care team, my husband and I have had to completely revisit what intimacy looks like for us. It’s been a series of contrasts: fun, frustrating, enlightening, confusing.

Tricks that once worked to help us maintain intimacy with my weak body are no longer relevant or helpful. Learning that some physical pursuits were only done to “make do” and were not actually preferred or enjoyed was eye-opening for me.

In order to discover what will work moving forward, Justin and I have had many honest, open, and awkward conversations about our emotional and physical needs. We do our best to be open-minded about what the other person is communicating and not take it in a negative way.

Let me tell ya what — when having chats about intimacy and discussing things that could be better, it is really hard to not take it personal when it makes you feel like you’re failing in that particular aspect of your marriage. But our talks are never meant to bring the other person down or create guilt due to a lack of fulfillment. The intent is to find a solution that works for both of us.

Intent and perception don’t always meet in the middle, and feelings are sometimes hurt. This is the reality of our commitment to each other to have these open and honest discussions.

A new honeymoon period

For the last 12 years, my husband has been my caregiver, and I’ve been in poor physical health. But the last six months have felt like we’re dating all over again, and we’re able to explore new areas of intimacy that were off-limits because of my health. We’re laughing more now, playing “grab-ass,” and having hard conversations so that we can continue to grow together.

It is almost indescribable to be in this situation. To think that after 12 years, we still have the ability to experience firsts together is something I don’t take for granted.

All of this is possible only because I never stopped advocating for better treatment that would allow me to live my best life. And living my best life is exactly what I’m doing.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.