Intimacy and sex are both subjects that often do not get enough attention in the AS or the disability community. I remember feeling overwhelmed and shy, not knowing who I could ask about these subjects as my specialist or family practitioner would say to me that “I will eventually figure it out” or “if you are in too much pain then you shouldn’t be intimate.” I have to say I was a bit shocked by the response and the unwillingness to even discuss how AS would affect my relationships, intimacy and intercourse.
I pondered about how the pain, medications, anxiety, and even sometimes depression would affect my relationship, but no one could tell me how these factors would impact my libido, my ability to be intimate, or my self-esteem. There are so many intersectionality pieces between AS and a person’s overall well-being, but doctors, and sometimes partners forget that sexuality and intimacy is just as important as managing AS symptoms.
There are 3 main puzzle pieces that have helped me regain my sexuality not only with my significant other but with myself.
This seems like a simple and intuitive step in an intimate relationship, but it can become difficult as AS or other aspects of disability become overwhelming. Disability becomes the focus, and the conversation usually shifts to the appointments, medication, and other immediate stressors. Intimacy, pleasure, and sex gets put on the backburner while everything else gets sorted out. It never feels like there is a good time to bring up the conversation, and usually quelling pain associated with AS takes priority, especially when newly diagnosed.
So, if there is never a good time to address intimacy needs then there is only one way to bring it up; and that’s to deliberately make time for both you and your significant other. This conversation requires both of you to be mindful and actively listen, which means no other distractions such as your phone. Also, it is important to have this conversation sooner rather than later as it can ease the anxiety and at times guilt that accompanies the lack of intimacy due to psychological or physical barriers.
Couples should talk about everything right down to the fears, the pain, and then build up to the kind of intimacy you both want from each other. It is so crucial to discuss each other’s comfort levels and what intimacy and sex will look like for the both of you especially in flare-ups. Addressing this puzzle piece openly provides opportunities for connectedness, empathy, and support to further build on the emotional intimate relationship. Communication is certainly the key when it comes to each other’s expectations, emotions, and comfort.
Intimacy and sex can become very uncomfortable especially when AS is flaring creating physical barriers. It’s hard to even want to do anything when pain is the primary focus. This is where the first part of the puzzle comes in and that’s to communicate this to your partner. When I was newly diagnosed and in severe pain it was difficult to even know what I needed or wanted sexually. It was the last thing on my mind, but without discussing this with my partner he didn’t know how to even approach me. All he knew was that I was always turning him away which created conflict.
I learned in my journey that discussing what I’m comfortable with during my flare-ups allowed us to continue to keep our spark, but this also gave him options to still be close to me. Finding what makes you most comfortable during sex requires trial and error, and it does not need to be figured out in one night. Living with AS can mean that needs change and that is quite alright. It can mean finding different positions, experimenting with adult toys, different lubricants, and what feels good in the moment.
Physical and energy levels can change so it’s important to be empathetic, patient, and recognize that it is no one’s fault when sexual intimacy does not go as planned. There have been many times for me when cramping and spasms in my lower back prevented me from continuing. I would get so frustrated and upset, blaming myself, but I had to realize that this is my new normal and it’s ok. I had to have this conversation with my partner and learned that intimacy was more than just intercourse.
This brings us to our third puzzle piece, sex is only a part of intimacy. For the longest time I struggled with my self-esteem as the symptoms of AS took over. I felt restricted and at times a failure in sexual intimacy when I didn’t have the energy or physical capacity. I believed for the longest time that sex was intimacy, and it wasn’t until later along my journey that I realized that this was not true.
Intimacy is closeness, support, warmth, and memories being built between you and your partner, yes intercourse is important, but it is only a part of an intimate relationship. I learned that being intimate could mean taking a shower or bath together, or watching a movie while cuddling, sending texts to one another, or sometimes something as simple as a kiss on the forehead. What I’m describing is known as emotional intimacy and it is the glue that holds relationships together.
Sometimes we cannot change the way our body is feeling or working, but we can create intimate memories, and build our connectedness to our partner despite physical barriers. Intimacy requires communication and active listening between you and your partner. There are no shortcuts to this and requires emotional labour from both sides.
These three puzzle pieces are interconnected, and one cannot fit without the other. These three parts create a picture that provides opportunity for you and your partner to build intimacy by being mindful, empathetic, and communicative about each other’s needs. I became more confident and regained my sexuality through being patient, forgiving myself, and finding what makes me most comfortable. Once all the puzzle pieces were in place I was finally able to reconnect with my partner both emotionally and physically. This conversation can be tough to start, but an important step towards a healthy intimate relationship.
Aerie is a married, passionate child and youth worker, psychology student, AS warrior, disability advocate and activist, blogger and caffeine enthusiast all rolled into one. She’s also started the Inclusive Community Engagement and Experience (ICEE) project, bringing training and awareness about the disability community in the university, further empowering students and fighting ableism. You can read her blog whimsyinx.wordpress.com or follow her Instagram @aeriekm17