Illustration from Anya Perepelkina
When chronic pain collides into your life, it feels like a giant, fiery meteorite has crashed onto your planet, leaving a tremendous, burning crater that needs your immediate, all-encompassing, attention. Your physical wellness is obviously impacted and your mental health is impacted, but no one prepares you for the impact on your sexual health. There are medical staff and mental health professionals waiting to help you with coping and surviving chronic pain. But when you look to find ways to care for your impacted sexual health, you will find little help or dismissal altogether.
People say chronic pain will be the end of your sexuality, and it is upsetting when you find out the people talking are your doctors. In my opinion, they are wrong: it is quite the opposite. If you allow it, chronic pain can force you to become an in-touch, adaptable, sexual person, who still wants to get laid. Instead of my sexuality dying, like they thought it would, it actually blossomed. See, chronic pain impacted my sexuality in a positive way I did not expect. It dragged me, fighting, kicking, and screaming to get in touch with my body, my mind, my sexuality, and my queerness.
Don’t get me wrong, I am not saying “chronic pain is not that bad and I appreciate what it has given me.” No, screw chronic pain. Instead, I am saying I accept this is my life now and I want to live with as many good moments as I can. I am not ready to give up and I am not ready for my sexuality to die.
Chronic pain forced me to become a spokesperson for my body. During my many doctor visits, I learned how to do quick and frequent body scans to get in touch with where the pain was and how it was feeling, even if the last thing I wanted to do is focus on my pain. I had to really connect and understand how every inch of my body feels, and be able to describe those feels in great detail.
It has also taught me how to speak about my pain without emotions. In the doctor’s office, I only have a few minutes to convey how my body is feeling and reacting to the pain. Those precious few minutes cannot be wasted on me having an emotional breakdown as I describe how horrendous it can get. I learned to separate the emotions from the facts, when it was appropriate to feel the emotions and when it was ok to put them aside for a few moments.
And those skills I learned, I transferred into skills to use during sexy time with my partner. I am able to describe to my partner how my body is at that exact moment. I am able to tell them how every inch of me is feeling. I am able to list off the parts of me that could be touched and not touched at that moment. I am able to discuss my pain with my partner, without any emotions, and have learned that giving them the information before and not during makes it easier to jump into sexy time, and not have to deal with the shame, guilt, disappointments, and other emotions we both would rather not feel at the moment.
Chronic pain also forced me to get in touch with my mind and finally learn who I am. Developing tools to deal with a life affected by chronic pain in therapy has helped me delve into my sexuality, and learn how to confront and banish those old demons from the past.
Getting in touch with my sexuality allowed me to finally admit my bisexuality to myself, something that I have known deep down inside since I was in first grade and had a crush on roller-skating Gloria in the fifth grade (scandalous!). Being able to communicate with my partner made it easier for me to accept my bisexuality and come out to him after we were married for a few years. I finally felt safe enough to admit it to myself and then to him. And this communication keeps our relationship alive and kicking through what I think would have destroyed many couples.
I also found another aspect of my sexuality: my kinky, switchy side. I found ways of exploring pain, learned pain distracts from pain, and there is pleasure to be found in pain. I could control pain, I could at any time stop the pain, restart it, and adjust as the scene progressed. I could take the pain away from me, I could separate and compartmentalize it now. I could have power over the pain. A kinky scene on Friday night empowered me and made me feel stronger so I could fight the battle against chronic pain on Saturday.
Finally, chronic pain made me adaptable. My pain can change every minute and is a different pain than it was yesterday. I learned to stop trying to assume what it will be like tomorrow. Instead, I learned to fill my toolbox, keep an inventory and add to it often. Because being adaptable means having tools for all types of occasions and being as prepared as you can be for the occasions you are not expecting. Those unexpected occasions can be a punch to the gut and that can lead to an ‘episode’ (when the buildup of dealing with the pain is just too much to handle and you explode like a hot whistling tea kettle full of bubbling, boiling water, spurting out in all directions).
Our sexuality can be an ever-changing enigma, and if you are in are queer and in chronic pain, well that is just a couple more more additional pieces to the puzzle. Of course, no one wants to have pain when they have temporary 0 to 10 toe-stubbing pain. No one rams their little, delicate pinky toe into the sharp corner of the dresser and cries out, “I am so horny right now!”. (OK, maybe there is probably one person out there that gets horny from a good toe-stub). But living with chronic pain is different. It becomes this gnawing annoying part of you that can sometimes be pushed far enough in the background so that you can try to live like a non-pain person, try to get things done, try to get some rest and try to get laid.
I realized how there was such a parallel between being queer and being in chronic pain. How I pushed down and closeted the extent of my chronic pain with family, friends, and society, just as I pushed down and closeted my bisexuality. How both my sexuality (affected by chronic pain) and my bisexuality felt misunderstood and marginalized by society. How both had so many misconceptions and stigmas attached to each. How both as a bisexual person and a person in pain everyone was talking for me, but not to me. And I felt like the people talking for me were conveying the wrong information.
Queer people in chronic pain still want to get laid, but we need help. We need resources and education because the old way of gettin’ it on doesn’t work for us and is frustrating and we are exhausted. We do not have the strength and energy to figure it out all alone. We need to hear from others who are in the same position and have advice, or who are interested and want to research this for us. So much of the information from journals and articles has this feeling like it is coming from someone from the outside looking in, and not from someone who has been living it for years and has specific detailed instructions, options, opinions, experience, and advice.
“Why not ask your doctor?” Well, do you feel comfortable enough with your doctor to talk about your sex life? Doctors can prescribe me drugs and treatment to help the physical and mental aspects of the pain, but none seem to offer advice or even have the education themselves to offer advice on keeping a healthy sex life. They do not have time to talk about my sexuality and have never once asked me, or my partner, about our sexual health in 18+ years. Nor have they ever handed me a shiny brochure called, “How to Have Sex When You Live With the Rollercoaster of Chronic Pain”.
To become an in-touch, adaptable, sexual person, I had to travel through a long journey of seeing doctors who demanded I get in touch with my body, seeing mental health professionals who demanded I get in touch with my mind and my sexuality, and learning the tools to survive life with chronic pain. I learned I want to share those tools with others, and why I chose this new career as a sexuality educator. I learned that living with chronic pain can be a spiral of decay and loss, but that if I can acquire tools and be adaptable and in touch, I can make it a spiral of growth and gains. And that I can stay adaptable, continue to keep in touch with my body, continue to experiment and learn so that I have a better understanding of my body.
Yes, we want to get laid. We want to get it on. We want all the good tingles and feel that make us feel alive and giddy. We are still alive and deserve to feel alive. We want to love and be loved. We want to be your lover, not the sick person you take care of. We want to see you as our lover and not as our caretaker. We want the opportunity to be kinky and explore our sexuality. And we want to feel the endorphins and oxytocin rushing through our veins. Because doing all this sexy stuff, not only feels just amazing, but for me, it reduces the pain enough to forget about chronic pain for a few moments. I might even forget I am suffering and just be a person, being intimate with my lover.
Margo M Maes
She / Her | Website