The day when a colleague made a passing joke against me, I will never forget: “You are a newborn! These days you and your husband MUST stay busy! “I remember the twisted reaction of my stomach. It wasn’t because we couldn’t hold one another’s hands — but the underlying truth was that we have had to.
Two months before that, I said to my high school sweetheart “I do” on a lovely day in the beginning of June. After nearly 8 unbelievable years, in a castle of the fourteenth century in North England, we had always dreamed of the wedding.
It was better than I ever thought and I’ll always be grateful for our memories. I recall looking at my new husband from our Sunrise on the flight home and I confident myself I would go home for some of my best days. But I would soon discover God’s various plans for me. Shortly after we came, new and apparently unrelated health problems came up quickly. I am speaking faster than the New Yorker crowd that is just lining up in the SOHO for one day.
I wasn’t worried at first. I’ve never been seamlessly without any health problems for one year in my life. But soon I knew in my gut that it was different this time. In such a little time, I have experienced heavy tiredness, unrevealable rashes, flashes, sensitivity to touch and weeks without sleep. For what a long journey would be ahead, I knew I needed to strap me.
The journey would be the worst flare I’ve ever had in my life and I would visit many doctors until I found a diagnosis. As many of you who have a chronic disease know, getting diagnosed is not an easy task. It takes so much time, energy, support and wild confidence to find answers.
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This is the start of my story as someone who has been diagnosed and suffers from fibromyalgia every day, but I believe the scene is enough to give me a next question. Although I know that for many of us this is an extremely difficult topic and that there may be people with greater credibility who can address it, I hope I will at least be able to contribute to a dialog.
Talking with someone who suffers from chronic diseases makes new waves of shame, anxiety and stress seem less sensitive than before. How can you tell anyone the unique problems you and your partner are facing, the daily questions that you are asking and the huge strain that can be placed on one of the apparently natural components of a relation? I can’t tell you how often I have been looking for advice from Internet rabbit holes to tell me it’s getting better.
I was facing innumerable papers that essentially ordered me not to allow my chronic illness to ruin my sex life. But I always had the same two questions: what if he already got? I can not speak for anyone but I always had the same questions: And does this mean I will always set the tone for my sex life in my chronic illness?
Many times I thought Fibromyalgia ruined my sex life , especially when I thought of times when my pain was so unbearable that I didn’t just have sexual activity, it also made it difficult to have any kind of physical touch. It’s derailed and isolated. “Not that too, I remember thinking. ”. I felt like I was working, my friends, and more, but still I thought my sexuality was off limits somehow. I became thankful to a partner the deeper I entered online forums that never pressure or that never complained, but I was curious that more people didn’t speak about the pressure.
Can I be the only person who tries to hide and frustrate myself if I can not? I was under enormous pressure to be “normal.” I had grown up to watch and love romantic films that made intimacy as easy as an annonce. All of them “just did it.” It was my own fault to try to simplify sex too much and allow my relationship to be comparable. I had to realize quite a while, but when I knew that I had to swiftly change my view, as every day started to feel darker and darker.
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I realized the comfort that I was looking for after hours of research was the result of trusting in my own instincts. It wasn’t easy to tell how I felt, but I started practicing. The dialog had been frightening, but it had done wonderful things. I haven’t been trying to be understood, truthfully. Less alone, I tried to feel. I was able to do so with what little trust I had left to share my feelings. I joined a support group for fibromyalgia and discussed my concerns.
Together with my husband and my friends, I shared my jumbled thoughts. Gradually I began to redefine the meaning of a healthy sex life and change the way I look for affirmation. I once realized, that a whole different life had been awaiting me, especially if it was the sort of romantic partner I should be. I loved my husband and who I was meant to be. He never expected me to be the person I believed I should be.
So will the tone of my sex life always be my chronic disease? I often begin to believe that declaration is true. I am doing my best to combat these thinking by remembering that I am not and never has been the basis of my relationship with chronic illness. It is not the single reason why we stay together if it breaks down or the solo reason. If all our faith and trust were to rest on my illness, we wouldn’t be where we are today.
I often see somebody who depends on others for everyday tasks when I look in the mirror. I see somebody that’s used to smiling. I see somebody who feels defeated and somebody who is struggling hard to see their own value. How can this person be appealing? My husband regularly reminds me that just because I feel something that doesn’t mean that others can see it.
So I must remember that when I see all these things, all these hard things, he could see something totally different. He can see someone willing to still show compassion to others, give to others and love others, irrespective of how she feels. This is the one attracted to my husband. Never was it the unloving faulty woman that I see in the mirror.
It’s frequently said, but forgotten, that in every relationship we should take good and bad. So my final answer to the final question above, “Is my chronic disease the key to my sex life for ever? “They ‘re no. No, you are going to set the tone for your sex life forever. It is your compassion and understanding which will set the tone forever. You will find your liberty here.
It is part of you, not who you are. Your chronic disease. Although I don’t know you and you may not know the chaotic bed 25 years old behind this computer screen and this morning four 400 MG Gabapentin’s already are frivolously typing, I believe that this thought is important for me. You are more than yesterday, and tomorrow you will be more than you were today. Do not be persuaded that you are less by your chronic illness.
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This Post Has One Comment
Thanks for sharing your story. You are so blessed to have someone that is so supportive. As you know, this illness can make us feel so alone, so hopeless and defeated.