a person zipping up their hoodie to entirely cover their face

Endometriosis Can Make You Socially Awkward (And That's Okay)

This last weekend was, quite unexpectedly, a busy one. Perhaps encouraged by warmer weather and brighter skies, friends and acquaintances were everywhere here in Brighton, U.K. I bumped into them at unexpected places and was invited to a last-minute lunch date.

After these happy encounters, I felt exhausted instead of elated, which isn't abnormal. But what felt odd was an awkward unease that lingered after seeing so many people.

As the weekend drew to a close, I stumbled home. My arms and legs were achy with fatigue, while my mind slowly obsessed over why I had felt so "off" around others.

Social challenges and chronic illness

I remembered not taking off my shades to say hello - hardly polite - and having to be encouraged to hug a couple of them - possibly a tad anti-social. Each step home became harder, and I realized that my behavior had more to do with how my body felt than the situation or the friends I'd met.

During the lunch date, my chronic fatigue loomed large, as I barely engaged with anything that didn’t resemble a heating pad. I was also suffering from a hormonal headache.

As we neared the end of the lunch, these symptoms worsened. I longed to get home fast, and my goodbyes became rushed and almost dismissive. So much so that later I messaged one of my friends to apologize.

Endometriosis shapes my social behaviors

When it comes to being social, my chronic illness defines a lot of my behavior, down to my clothes.  This weekend I was in physical pain, so I chose comfortable clothes, a huge wooly hat, and shades. This is the uniform I wear when wanting to hide from everyone.

When I feel like this, I shy away from physical affection, like hugs, and awkwardly wave at others from a distance. I am pretty sure this makes me come across as a bit standoffish.

I am planning a short summer break with a friend and am delaying making decisions regarding shared accommodation. The thought of inhabiting a communal space while suffering through an IBS flare-up or other embarrassing symptoms makes me reluctant to agree to do anything.

Also, almost every time I eat out, I end up with an uncomfortable bloated stomach. Most menus carry ingredients I generally avoid, but my dietary restrictions are so particular and extensive that I cannot impose this on others. The easiest alternative is to suffer in silence or avoid making any plans involving food.

I also struggle with acceptable societal rules around conversation. After an hour or so, if I am mid-flare-up, my brain fog will prevent me from remembering facts, like someone's name. This worsens as my social anxiety kicks in: I will switch words around or confuse popular sayings. Because of this, I stay quiet and refrain from asking questions that could make others feel included.

While I often do this behavior to manage a life-disrupting illness, I cannot help but laugh as I type this. Like, of course, I have very few friends! The life and soul of every party I am not!

This past weekend was a fluke. I rarely get asked out by others, and my loneliness is closely linked to feelings of unworthiness. One could argue that openness and communication would help preserve these relationships and make me feel less of a loner.

Navigating social expectations and self-acceptance

In the past, I have explained how bad flare-ups make me housebound for weeks and openly share my struggles. Yet, people still dropped me.

The truth is that I am okay with being "socially unconventional." I now see how certain social expectations are not accessible to everyone and don’t consider people’s physical limitations. I know I am a good friend and a fun one, too.

Maybe that version of myself comes into play when I am not in a challenging situation. Maybe, "party animal me" exists within what feels safe, with painkillers nearby and anti-inflammatory foods.

Also, maybe, it's not up to me to fix how others choose to see me.

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