Let’s talk about damaging comments for a second. I know, not a great, cheerful opener, but this has been heavy on my heart lately.
About a week and a half ago I got my surgery date. December 16th. I am two months away from excision surgery! This should be the most exciting news. My surgeon is the only Nancy’s Nook approved surgeon in MI, he accepts my insurance, and he has an 80% remission rate. Obviously I am over the moon and thankful for this opportunity. There’s a feeling though, deeeeeeep down in my stomach that doesn’t feel right. It took me a minute (a therapy session or two) to be able to name this feeling. It’s fear. Not fear of the surgery itself but fear of what comes afterward.
I have endometriosis. This is a fact. It was surgically diagnosed by a gynecologist and an endometriosis specialist confirmed this. The problem is, though, that doubt was placed in my head by another doctor a few years ago. She went in to operate, mostly on my bladder (yay, interstitial cystitis), and told me she didn’t find any endometriosis. This should have been good news but after spending 5 years fighting for a diagnosis and FINALLY getting one, hearing that you may not actually have it feels like you’ve been pushed back to square one. What was wrong with me then? Why are my cramps debilitating? Why do I bleed for 10+ days every month? It didn’t make sense. If I DIDN’T have endo, why had I spent the last three years of my life completely dedicated to this disease? It sent me into a self-doubt spiral. A lesser-known symptom of chronic pain.
Doubt comes at you from every angle when you live with chronic pain. Your friends, family, doctors, that one guy on Facebook who thinks you just need to drink more water. These people, whether they mean to or not, can send messages of doubt. Over time, these messages chip away at the armor you’ve put up and can send you down your own self-doubt spiral. It’s scary. It makes you start to believe you have been making everything up, or you have a low pain tolerance, or that you’re lazy. It takes an insane amount of effort to climb out of this hole. Living in such an ableist world can take a toll on you. When everyone around you is hustling from one thing to another without resting, saying they’re tired and then going out on the weekends, and working nonstop during the week, you feel like you must meet these same standards. You can try and try to keep up, but eventually your body will fail. You will run yourself into the ground, or if you’re anything like me, a year long depression exacerbating the pain. Thoughts of failure sink in and you feel less than adequate compared to your healthy peers. It’s damaging. Nobody deserves to be made to feel inadequate or be lead to doubt their own pain.
A single surgeon, who meant well, lead me to doubt my own pain. I had worked hard to accept my diagnosis and all it took to feel like the progress had been undone, was a single sentence from a doctor who was, frankly, not trained enough in endometriosis. This was 4 years ago. Since then, I have made even more progress toward believing myself when something feels wrong and advocating for my needs. This is why I have so much fear about my surgery in December.
As I see it, my surgery can end in one of two ways. One, he goes in and can’t find any endometriosis. Two, he goes in, finds endometriosis, removes it, and I heal (even just a little bit). Both of these scenarios make the little ball of fear in my stomach do a little jump. If he doesn’t find any endometriosis, I am back where I was four years ago asking myself what the point was of spending the last, now 7, years studying and advocating for this disease. I have been so certain that my purpose in life has been this disease. If it turns out I don’t have it (which, might I add, is not likely at all) will I feel like an imposter? Will I feel like I wasted my time? Neither of those sound easy to deal with. The other scenario is where things get a littler tricker and a tad bit illogical.
If he goes in and removes endometriosis and I recover, what comes next? Endometriosis is a huge part of my identity. When people I know hear the word “endometriosis,” they instantly think of me. People I know and love are actively advocating for and educating others on endometriosis because of ME. If I am “cured,” doesn’t that mean I lose that part of me? Doesn’t it mean I no longer fit into the one community of people who fully understand what it is like to be me? And what if I don’t get better? Does that mean that everyone who insinuated I was lazy or had a low pain tolerance was correct? These are just a fraction of the thoughts that have been ravaging my brain since the surgery was scheduled. This loss of identity may sound silly. I thought it did. I felt like I was being ungrateful for the opportunity for relief. It felt like I was stupid to fear such a life-improving surgery. To top it all off, I felt like I was the only person to ever feel this way.
My therapist, a wonderful therapist, did her job and validated these feelings. She also suggested I turn to the community of people who have the highest chance of understanding these feelings: the endometriosis community. The community I so feared being exiled from if I recover. Turns out, I am not the only one who feels this way. These damaging comments from other people stick with us so closely that we end up fearing our only option for disease treatment. How sad is that? We have this ONE thing to bring us relief yet we fear that the people who doubted us were right all along. The thing is, we don’t talk about these things. We refuse to acknowledge these thoughts and feelings that don’t feel appropriate to the situation or that seem illogical. THIS is what does the most damage and is one of the reasons it takes 7 years on average to get a diagnosis. This stigma of trying to say the right things or think the right thoughts, it prevents us from getting to know the real issue at hand here. People who menstruate, for centuries, have been oppressed and silenced, especially when it comes to our bodies. It’s time to talk about it. Nobody would be alive today without a menstrual cycle so why do we act like it is the most unnatural thing in the world? It’s unacceptable. I wrote this post to open the conversation to these “less pretty” things. It hurts when you bleed? Talk about it. Your blood flow is abnormally heavy? Talk about it. You have “wrong” thoughts and feelings about what should be the happiest surgery of your life? Talk about it.
The endometriosis community has shown me that I am not alone in these feelings. Not only that, but they have shown me that whether I have had actual endometriosis lesions for my entire life, or never for a second, I AM a part of the endometriosis community. The 12 years of pain was real and the passion I have for the disease is real. Neither of those things are being taken away from me. I have endometriosis and I will always “have” endometriosis. Now, I can finally allow myself to be excited for this surgery and allow myself to heal. After all, with less pain I can advocate for endometriosis patients with even more vigor and focus.
I decided to start a blog because my mental and physical conditions are constantly changing, and I want to help encourage people with similar experiences, and let them know they are not alone.