Having an invisible illness looks like cancelling plans last minute. It looks like feeling guilt and anxiety that people will take for you being flakey or making excuses. It looks like showing up to your responsibilities and looking like yourself on the outside, but feeling like the furthest thing from yourself on the inside. I have endometriosis, and not only is it an invisible illness to others, it’s also invisible to me.
You see, the only way that endo can be officially diagnosed is through laparoscopic surgery. No amount of CT scans or ultrasounds can show it. Instead, it silently wreaks havoc throughout my entire body, including my mind.
In my experience, the absolute hardest thing about having an invisible illness are the mind games it plays on you. After years of having doctors tell me that my slew of life-hindering symptoms were just “part of being a woman,” I began to internalize that idea. Even when I met with a specialist who validated my pain and verbally diagnosed me, I would — and still do — continue to gaslight myself.
Thoughts like, “You’re just being dramatic,” or “Are your symptoms really that bad?” plagued my brain. They still do. But the sad (yet weirdly comforting) thing about this is that it’s a shared experience for those with endometriosis. When I expressed my concerns to my surgeon, he told me that the very first thing people say when they wake up from surgery is, “Did you find anything?” and they’re always able to say yes. This is then followed by a sigh of relief and a, “So I’m not crazy, it wasn’t all in my head.”
I get surgery in about a week, and I’m still battling away at the inner voice telling me I’m overreacting, or that nothing will be found. It seems that the closer I get to surgery, the louder that voice and that anxiety gets. But another thing my incredible surgeon and endometriosis specialist (shoutout to Dr. Chatburn!) told me is that I need to rely on the fact that I feel that something is going on inside of me that is not right.
Because all in all, something is not right. It isn’t right that I have to miss out on plans with the people I love because I’m too fatigued, or that I can’t make it to class because it hurts too much to walk. A normal period is a relatively painless period. But until that narrative is shifted and more doctors take women seriously, it is crucial to keep advocating for ourselves, both externally with doctors and internally with ourselves.
I truly can’t wait to wake up from surgery and be able to confidently say, “So it wasn’t all in my head.”
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