Guest Blog: The Unlikely Pairing: Intimacy & Chronic Illness
Written by Gabrielle Donnelly Lane
I will never forget the day that a co-worker made a passing joke directed at me: “You are a newlywed! You and your husband MUST be keeping busy these days!” I remember the way my stomach twisted in reaction. We were being kept busy - but the underlying truth was - it wasn’t because we couldn’t keep our hands of each other - it’s that we had to.
Two months prior to that, on a beautiful day in early June, I had just said “I Do” to my highschool sweetheart. After almost eight incredible years together, we had the wedding we had always dreamed of at a fourteenth century castle in Northern England. It was better than I could have ever imagined and I will forever be grateful for the memories we made. I remember looking over at my new husband on the flight home from our honeymoon and confidently thinking that I would be going home to some of the best days of my life. I would soon discover, however, that God had different plans for me. Shortly after we returned, new and seemingly unrelated health issues appeared at a rapid pace. I’m talking quicker than a crowd of New Yorker’s lining up for a one day only pop up shop in SOHO.
At first, I wasn’t concerned. I had never gone through a year in my life seamlessly without any health issues. However, I soon knew in my gut that this time was different. I experienced heavy fatigue, unexplainable rashes, burning sensations, sensitivity to touch, weeks without sleep, and so much more in such a short amount of time. I knew I needed to brace myself for what would be a long journey ahead. That journey would include the worst flare up that I have ever had so far in my life and visiting numerous doctors until I found a diagnosis. Getting diagnosed, as many of you who suffer with a chronic illnesses know, is no easy feat. It requires so much time, energy, support and a wild confidence that you deserve and will find answers.
That is only the beginning of my story as someone who has been diagnosed and suffers daily from Fibromyalgia, but I believe it is enough to set the scene for my next question: What does intimacy look like when you have a chronic illness? While I am aware this is an extremely difficult subject for most of us and there may be someone with superior credibility to broach it, my hope is that I would at least contribute to sparking a conversation.
Broaching the topic of sex seems less sensitive than it used to be, but to discuss it with someone who suffers from a chronic illness brings new waves of shame, anxiety and stress. How can you explain to anyone the unique struggles you and your partner face, the daily questions you ask yourself and the enormous strain it may put on one of the most seemingly natural parts of a relationship? I can’t tell you how many internet rabbit holes I went down in search of some form of advice that would tell me it gets better. I found myself face to face with countless articles that in essence commanded me to not let my chronic illness ruin my sex life. I can’t speak for anyone else but I always had the same two burning questions in response: What if it already has? And does this mean my chronic illness will forever set the tone of my sex life?
There were many times that I thought Fibromyalgia had ruined my sex life, especially when I think of the times where my pain was so unbearable that it not only made my sex life non-existent, but it made any form of physical touch difficult. It was defeating and isolating. I remember thinking “Not this too!”. Fibromyalgia had affected the way I felt about work, my friends and most everything but still somehow I thought my sexuality would be off-limits. The deeper I got into online forums I became very thankful for a partner that never pressured me or complained but I became curious why more people didn’t talk about the pressure they put on themselves. Could I be the only one trying to hide my own circumstances and getting frustrated when I couldn’t? The pressure I had put on myself to be “normal” was immense. I had grown up watching and adoring romantic movies that made intimacy look as easy as a nike advertisement. Everyone was “just doing it”. It was my own fault for trying to oversimplify sex and allowing comparison to live in my relationship. It took me quite awhile to realize that I was doing those things but when I did I knew I needed to change my perspective quickly because each day was beginning to feel darker and darker.
After hours upon hours of research, I realized the comfort I was seeking would come from trusting my own instincts. It was uncomfortable to communicate how I was feeling but I began practicing. Starting the dialogue was scary but it did wonders. Truthfully, I wasn’t seeking to be understood. I was seeking to feel less alone. By using what little confidence I had left to start sharing my feelings, I was able to do so. I joined a fibromyalgia support group and spoke about my concerns. I shared my jumbled thoughts with my husband and my friends. Little by little, I started to redefine what a healthy sex life means and shift the ways in which I seek affirmation. I realized once I let go of who I thought I should be, especially when it comes to what kind of romantic partner I should be, that a whole different life was waiting for me. My husband loved me for me and who I was intended to be. He was never waiting for me to become the person I thought I should be.
So will my chronic illness forever set the tone for my sex life? There are many times I start to believe that statement is true. I do my best to battle those thoughts by reminding myself that my chronic illness is not and was never the foundation of my relationship. It will not be the solo reason if it falls apart or the solo reason that we continue to remain together. We would not be where we are today if all of our faith and confidence was resting on my illness alone. Often when I look in the mirror, I see somebody who is dependent on others for daily tasks. I see someone who is used to faking a smile. I see someone who feels defeated and someone who struggles massively to see their own worth. How could that person be attractive? My husband likes to remind me on a regular basis that just because I feel something that doesn’t mean other people can see it. So when I see all those things, all those really hard things, I have to remember that he could be seeing something entirely different. He could be seeing someone who is still willing to be compassionate towards others, giving towards others, and loving towards others regardless of how she feels about herself. That is the person my husband is attracted to. It was never the unloveable flawed woman in the mirror that only I see.
It is often said, yet forgotten, that we should take the good with the bad in any relationship. So my final response to that last question above of “Will my chronic illness forever set the tone for my sex life?” is no. No, it’s you that will forever set the tone for your sex life. It is the compassion and understanding that you have for yourself that will forever set the tone. That is where you will find your freedom. Your chronic illness is a part of you and not who you are. Though I don’t know you and you may never know the messy bed head 25 year old behind this computer screen frivolously typing away and already four 400 MG Gabapentin’s in this morning, I feel it is important to close with this thought. You are more than you were yesterday and you will be more than you are tomorrow than you were today. Do not let your chronic illness convince you that you are less.