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The Taboo Side of Fibromyalgia

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I am going to be honest and open and I have a sneaky suspicion that there will be many others like me, secretly suffering in silence. I have fibromyalgia and have done so for quite some years now. I am lucky to be able to say I am happily married, and this taboo side of my condition is something I have struggled to find information on. Sex with chronic pain.

Chronic pain in itself is difficult, many symptoms to manage and hypersensitive to touch, so if I flinch at being touched lightly by another person, imagine the fear I have now developed about having sex, or any physical intimacy with another person for that matter!

Skin is skin and mine swells, bruises, gets rashes and sore patches and feels super sensitive in a painful way no matter where it is on my body. My husband and I have to choose our physically close moments wisely, it can be stressful worrying about getting a flare up, or feeling ill for sometimes days by choosing to have sex. Sometimes the irritation causes water infections or thrush like symptoms which even my consultants cannot help me with, they just tell me there is nothing they can do, be gentle.

I have had to learn meditation and deep breathing exercises to relax myself in preparation for physical intimacy, and my husband and I have to make sure we communicate more about our needs and wants, the mood we may be in and the fears, usually of getting hurt for me and letting him down, being a sexual disappointment and for him being the one hurting me and causing me pain when all he wants to do is shoe me love and his sensuality. Spontaneous love making is not generally able to be enjoyed any longer. I need to plan, to use lubricants to avoid soreness, and take time to calm my body and relax, as those with chronic pain are aware stress and tense muscles only make the condition worse.

I feel guilty a lot of the time that my husband has to worry about this natural part of our relationship and try to help me so much in the most personal and intimate times alone together, it can take the fun out of it all. I want to be the carefree partner I once was before my illness, but I know that is just not possible now. It really is true that when ill with a chronic illness, particularly chronic pain, every single area of life is affected.

I have learned to cope by communicating more with my husband, being more aware of my needs and my husbands needs and emotions about how we have had to adapt. We have experimented with new and different ways to feel close if I am not able to manage full sex. We try to spend time cuddling and kissing in a bid to feel close. We try to find the most painless positions and actions that help us to feel good, and most importantly, we always try to be aware that we are in this together. I have said the word “try” because that is all we can do, sometimes trying is not enough and we cannot do what we would like to do. Always another day. Many relationships break down because the dynamics change after illness. The burden and inability to do the things previously enjoyed cause a pressure that may seem unfixable.

As with all areas of coping with chronic pain adapting to new ideas to be able to manage, and even enjoy life is the only way forward, just in a different way than before. I feel it is an important mantra for me to repeat that “nothing alive stays the same.” All people go through life and change, so the weight of the guilt of not being able to manage what some others may take for granted, perhaps can be lifted in the knowledge that no one is without needing to adapt at some point, all we can do is keep trying for what makes us happy, safe and loved.

Photo credit: vadimguzhva/Getty Images

Originally published: April 28, 2021
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