How I Reclaimed My Sexuality as Someone With Chronic Illness #rwanda #RwOT #benimöğretmenim

The truth is, I spent my high-school years in and out of hospitals in pajamas and hospital gowns, all while pushing friends away and blocking out the world.

Chronic illness and sexuality: two very different words that aren’t often found in the same sentence. In all honesty, I never thought I would speak on my chronic illness and sexuality together for others to read. The truth is I wish when I was younger that someone had spoken more about it. I am 23 years old and only now can I finally say that I am confident in my sexuality as someone living with a chronic illness. I know that your sexuality shouldn’t be defined or impacted by your chronic illness, but it does!

Image of contributor in a hospital setting wearing a red hat

I was diagnosed in what would have been pivotal years in my life. Instead of being filled with self-discovery and fun, they were filled with fear and the abrupt lack of understanding for my own body. My body turned into the focus of my frustrations, searching for what was wrong, what needed to be fixed or tested. In a time where my body was a temple, until it became an unwell object being poked, prodded, examined and tested.

A sense of numbness came over me, a protective shield, a disconnect within myself. I forgot the strength and power I had within my own body, the pride and love that I should have had for my body. For years I held anger towards my body for being unwell, resentment for what I thought was my body failing me. Any self-worth, for what my body was fighting was so hard to do, was lost.

I have never had a conversation about between dealing with the ups and downs of a chronic illness and the desire to feel sexy, or learning and understanding to be considerate and patient with my body when I am unwell and the courage and permission to enjoy my body when I am well. This self-reflection has taken time to realize and adapt to as my own healthy way to look at my illness and my body as one.

A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

I remember turning 16; life at that moment was a storm of unknowns and the aftershock of a new diagnosis. Watching as time passed on social media, friends having parties, driver licenses and boyfriends, a life I thought was unreachable for me. As I grew up over the years, I learned that having a chronic illness came with a sort of stigma, preconceived ideas. Dipping my toes into dating and let me tell ya, that darn stigma, it isn’t sexy. Fast forward to my 18th year of life, and dating apps were all so intriguing to me as they were to everyone else. I could control what guys could know about me and to put it bluntly, I had no interest in disclosing my chronic illness. How sad is that? I automatically believed a sigma that assumed about me: that I wasn’t dating material, I need to be taken care of, my life wouldn’t evolve like their life.

I wholeheartedly thought that there was no way any guy would think of me as sexy after learning I have a chronic illness. On the flip side, I also learned the total opposite existed, guys interested and enjoyed being the caregiver in the relationship. I am sure this varies for many people, so I am only speaking on my experience. I found myself in a whole new scenario where the guy was only attracted to the idea of me “needing to be taken care of,” more focused on what help I needed when I had unwell days than focused on who I was aside from my illness.

Here I was 18, wildly puzzled on how I was going to find my place in life, in romance, in sexuality and still figuring out my chronic illness. No one ever said it was a walk in the park. If I can live and learn to love myself and my illness, then I can find how to live and love as a women who feels sexy when I want to. I can feel strong every day for what I have overcome and learned each day.

Today, I am 23 and finally feeling like I have figured out life a bit more. I finally realized that no one has everything together nor has their future planned. Life is crazy in the sense that tomorrow things can change, you can meet someone new, and you can discover something new within yourself. I might not have all the answers, but I have many years to learn, find new and better ways to live life in harmony with my illness. One thing that’s for sure, I am glad I started talking about chronic illness and sexuality.

What has your experience been, and have you found balance in your life within illness and sexuality?


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