When Endometriosis Makes You Feel Invisible

I am aware that for a lot of people, I am Jess the one with endometriosis. Part of this is my doing: writing and editing content on this disease has become my full-time job. I speak on podcasts and do my best to raise awareness of endometriosis on social media platforms and beyond.

What I usually get asked

Yet, during conversations with other people, very few don't mention my disease. I love to be asked about my dogs, any films I’ve enjoyed recently, or whether I have any music recommendations. Yet, sadly, questions like that, are quite rare. Most of the time, the first thing someone inquires about is my health. And it’s not a general “how are you”. It’s more of a “how much pain are you in?” or “how is, your thing, going?". These questions often come with tilted heads or feigned expressions of pain. It feels like all they see is the disease inside of me. When any conversation about me centres on my health, any personal achievements, and my best personal traits, are forced into invisibility.

It’s like they forget I am a fully-formed person

I have a sense of humor. I have plenty of things that interest me. I can talk about politics, culture, or explain in three languages why RuPaul’s Drag Race is the best thing to have happened culturally in the last ten years. To be brutally honest, I hate to talk about my symptoms. I generally ignore them if they are mild enough, or try to manage them with my usual tools for pain relief. During my daily existence, all I do is try to function like everyone else and forget about my endometriosis.

My disease is a constant, but one I choose to share or keep hidden

On occasion when I’m out, I may be quieter than usual due to sitting through intense pain. Often, I am not able to follow a conversation fully, and I can sound disinterested. In reality, my brain fog is stopping me from thinking straight. On other occasions, any medication I’m on makes me drowsy.

It is especially during those times that I choose to keep the battle inside of me, hidden. I want to get over my flare-up without being seen as unwell. I want to function normally, eat, dance, and smile, like everyone around me, who happens to be pain-free.

If anyone notices, there is pity or uncomfortable faces. Sometimes, an uncomfortable silence. Then conversations center around endometriosis for a while, and when it ends, everyone turns to someone else for a lighter chat.

Invisibility also comes when talking to doctors

While seeing doctors is a regular occurrence for those of us living with endometriosis, it takes a lot of time and effort to find a physician who will really listen to us. For most doctors, we are merely a puzzle to solve, a set of problematic ovaries, or a collection of adhesions.

Once, during a post-surgery appointment, a doctor asked me if I planned to have any children. I explained how my pain was so severe, I couldn’t imagine taking care of a child. Ten minutes went by, and as I turned to leave, the same doctor encouraged me to “go have a baby”, since my adhesions were at an all-time low.

It didn’t matter how I’d expressed how much pain I lived in. They overlooked my own desires and saw me as a fertility conundrum to solve. I feel as ordinary as a paper towel.

I am not merely a “patient”. Yet it feels like I am seen as a statistic, a number when I am an actual person. I am a human being with dreams and aspirations, and a need to exist outside of my disease.

I didn’t choose life with endometriosis. None of us in this community did. This chronic illness chooses to settle within our bodies, seeking no permission. It’s not who we are. We are all so much more than this disease.

I wish the rest of the world would see that too.