Coping with Appearing Vulnerable: A Spoonie Nightmare

I started having health issues at a socially tender point in my life: when I was twelve. You all remember what it’s like to be “different” as a tween. It suuuuuuucks and you’ll do anything you can to pretend everything is fine just so you can keep face. And so I learned how to hide my pain and weaknesses with all the skill and cunning of a wild animal trying not to gain the attention of wolves.

Eventually I grew up, realized the approval of my teenage friends didn’t mean shit and entered a life where adults also didn’t appreciate or respect “invisible illness,” made doubly invisible by the fact I was desperately hiding it from everyone to maintain a sense of normalcy. To make matters worse I then got into my first relationship which was with a narcissist that lasted five years. He contributed gaslighting to the situation. He was the only one I ever showed my pain and he in return made me feel like I was making it all up for attention until I also stopped showing him which honestly didn’t take long.

My life experiences are not unusual among others coping with invisible illness. Although society likes to constantly insinuate we’re weak or just like “government handouts” we’re actually a fierce and independent bunch. That’s why it hurts so much to be so completely disrespected and disregarded. A majority of us are women – used to our pain being downplayed or dismissed by hospitals and doctors, far too practiced in conversations with friends, family, and loved ones, where we’re not taken seriously there either.

So now I am in my mid thirties and I have some pretty unhealthy coping mechanisms. After my narcissistic boyfriend replaced me with a healthy new womb (whom I was told repeatedly was better than me in only every way) I decided there was no one out there capable of loving me with all my various health issues. I lived the single life for years, didn’t even bother looking for any sort of companionship. I’d been discarded like trash so many times that it had permanently soured my view of people and the world.

But being human it was only so long I could handle being completely and utterly alone. I enjoyed my independence but I was falling deeper into a loneliness inspired depression. I returned to the Universe and said, “If you have someone for me send them my way because I’m not going to actively look for them.” The Universe nodded and a few months later I did indeed find myself starting a new relationship with great trepidation.

I was worried about a lot of things. It’s insanely intimidating to enter the dating scene again in your thirties after having only one romantic partner on your resume. I felt inexperienced, naïve, behind the times. But the things I worried about seemed so trivial in the long run. What really got me was things I wasn’t expecting at all — first and foremost my need to appear healthy and capable was at the crux of most of my issues. I was not OK with showing my vulnerabilities to a new love interest which was insane because I already knew he was one of the most empathetic people I’d ever met with a diverse friend group and not a judgmental bone in him. Still, the side of myself I chose to show was that of an ambitious die-hard independent individualist. I made sure to meet him on good days and we went on adventures and I showed him my writing and my art. Nothing could stop me. I was unconquerable.

But there I was one night super sick and he was at my side. It came on suddenly and unexpectedly. I’d brought him into my space, was fine, and then I really wasn’t and I couldn’t find any convenient excuse to make him leave. I was in such a state I could not get up into a sitting position to get off the day bed. I had nausea so bad any tiny movement was going to make me hurl.

“You don’t look OK.”

“I’m not.”

He disappeared. Oh, thank God, he’s left, I thought to myself. I didn’t know where he’d gone to but I am used to being left alone when I am dealing with some unsightly health issue that makes others uncomfortable. And quite frankly I prefer this. Much to my chagrin he reappeared a minute later, a piece of bread in one hand and a little trash bin in the other. I hadn’t asked him for either but he thought the bread might settle my stomach and the bin – well I could stop dry heaving and just let loose in the bin if I had to.

I still couldn’t move but by this time had at least wobbled my way over the edge of the bed to a sitting position through monumental effort. This had taken me maybe 20 minutes. I was still heaving and gagging. I couldn’t bring myself to look at him. I took the bucket and tried muttering thank you but honestly the one thing I wanted to do more than vomit was cry. Pretty much had a silent melt down right then and there. And then I gained a little composure and was able to get up and shuffle my way to the bathroom where I sat over the toilet for quite some time.

I didn’t know I was going to be sick. I had no idea sitting in a weird position on the day bed would cause such a violent reaction with my GURD. This was humiliating. But my beau was so sweet and reassuring and helpful. Why did I have such a need to push him away??

Two weeks later when he was introducing me to friends I’d throw up on their feet. In public. In a group. This time it was my EOE – I had a piece of chicken stuck in my throat and it wasn’t going down but anything I drank to chase it sure was coming up!! Now look at me, a hot mess, a whole gaggle of people being way too cool about me really not being well. Again, all I wanted to do was run.

My beau clearly adores me. I honestly feel like a total shit for being so closed off. I’M TRYING but really I have no interest about talking about my past, or my feelings, or my current struggles, or why I might be throwing up dinner. I’ve relied on only myself for far too long and I don’t honestly know how to fix this. Recently I’ve found some comfort in the below song. Only some because although I 100% agree with the sentiment in it I also think it’s utterly psychotic. Siiiiiiiiiiiiiiiiiiiiiiiiggggggggghhhhhhhhhh.

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