I’ve been throwing around the words “I’m doing better” around for years to the point where they’ve lost a lot of meaning. This year marks nine years of being in chronic pain, the last five being the ones where it has been all consuming. The strange thing about invisible illnesses is how long they can go unnoticed, I’m not sure how many people even know how long I’ve been in chronic pain—surprise, it’s been a minute.

It’s an exhausting game explaining the unexplainable to people who are just searching for a label to slap on what it is I am sick with. It’s an even more depleting game trying to find answers for yourself. You hope a name for the pain will make it small  and insignificant but that’s not how it works. It’s taken a long time to find any kind of answer, let alone a true one. I like to describe it as sitting in front of a ten thousand piece puzzle where all the pieces are roughly the same shade of pastel blue. You try and piece it together to create a clear image, but you misplaced your glasses so all the pieces blend together and it’s impossible to see what the bigger picture is. It’s taken a minute but I have finally found the right prescription for my eyes and stumbled across the kind of clarity I thought was out of my reach. The dull puzzle pieces I’ve been staring at for years have transformed into an unpredictable picture that holds so much beauty, I hope my words allow you to see that.

Let me start this long overdue post by telling you that I’m doing better. But those words have lost most of their meaning to me so let me rephrase—from the moment my health slipped through my fingers and shattered into pieces years ago up until earlier this year—I never thought I would get to a place where I was doing this well. I spent so long accepting my fate, mentally preparing for the worst, and secretly hoping for this.

In April this year I underwent my second surgery for my endometriosis. It’s been a brutal journey to get to a place of healing within the realms of this disease. I started seeing a specialist in St. Louis last year who’s only focus is endometriosis, which is still a rare find. Endometriosis is a disease with a lot of unknowns that has only recently become more known through campaigns to educate women, but it is a disease that is often misunderstood and mistreated. It took six years of pain and symptoms before a doctor even mentioned this disease to me. I was shamed for my pain, accused of lying, ferociously interrogated, and told my pain only lined up with sexual abuse, all at the ripe age of 14. My only female doctor at the time didn’t even believe me. Instead, she sent me off to pelvic floor physical therapy in a way that was more of a punishment for me and my mom advocating for the pain that was only just beginning. I was left in a place where it was kind of my little secret with my mom—she would pick me up from school early and take me to the old creepy hospital where the only pelvic floor physical therapist in town was. I would lie to my friends that I was still in physical therapy from my knee surgery, because what on earth is pelvic floor physical therapy? And who wants to admit they traded their Catholic school uniform for a hospital gown every Wednesday only to feel more violated than you ever should in a hospital room?

My mission to be diagnosed has been a lot longer than even I realize at times. I have suppressed a lot of things that have happened to me at the hands of health care professionals that vowed to do no harm but somehow still left a permanent mark and a bitter taste in my mouth.

But this isn’t a tragic story, I reject the idea that hard times are calamitous. I have found more beauty in overcoming my trauma than in anything else. There is something so inconceivable about the act of overcoming, about climbing out of the pits of a depression so deep it’s a miracle just to be alive, about striving for a growth so wild that is far more precious than any kind of fulfillment you could find in anything other than yourself. This story is more beautiful than anything I could’ve ever fabricated in my imagination because it has shaped a lasting vulnerability that is a force to be reckoned with.

My surgery earlier this year was somehow the grossest and most glorious thing to happen to me. It was a major surgery that I’m still wrapping my head around. I spent months prepping for it from pre op tests to pre op physical therapy. I spent a lot of time driving for the kind of care that this disease needs, I’m fortunate that I’m in a position and place in life where I could make the weekly trek of three and a half hours. I was living my life in a bubble, counting down to a surgery that could change everything.

Surviving the anxious countdown to uncertainty was a strong cocktail of emotions. All those emotions aside, I still pride myself in being strong and appearing emotionless in any given medical scenario and going into this surgery was no different. The big difference was my surgeon, I like to describe him as angelic as possible because that’s who he is to me. He has given me more knowledge than I have ever received from a doctor, he hasn’t once questioned my pain—instead he believes in it, he advocates for it, and he has validated my illness in a way that is indescribable. He came into my hospital room and prayed over me with my family, he has redefined what a great doctor is for me, and has given me my faith in health care professionals back. He removed thirteen masses from all over my abdomen—he took out my collapsed appendix, removed a massive cyst from my fallopian tube, took out a huge mass of scar tissue that had displaced my colon (from my first surgery), removed a nerve, and cut out nine more adhesions. He sent all of what he took out to the path lab and now I can say without a doubt and with complete proof that I have endometriosis. That is not something I ever thought I needed—physical evidence. But as it turns out I needed to see it in writing and be told that without a doubt that I have this disease. Even if it means I have to manage it the rest of my life, which likely means fertility issues and more surgeries. Having an official diagnosis validates my pain in ways I didn’t know were possible, it silences the voice in my head that likes to make me think I made my pain up, and it makes every doctor who didn’t believe me, or listen to me, or fight for me, melt away. Compared to doctors telling me they think, they believe, or that they assume I have endo, my surgeon has given me the most sound answer I have ever received in the fight for a diagnosis.

Post op was the grossest thing I have ever gone through but also gave me lens to see my own strength. I was in the hospital for the majority of the week after my surgery. I was more anxious about a traumatizing hospital stay than my actual surgery. I had only had negative hospital experiences and up until this point I didn’t know it was possible to be hospitalized and have a positive experience. I woke up post op with a tube coming out of my lower abdomen and the good news that they didn’t have to cut into my colon at all. When I was finally able to go home I left the hospital with two tubes—the one in my abdomen which was a pain pump and the other a foley catheter.

I’m sure some people will think I am over sharing about what my body went through, but I think it’s truly incredible what my body has overcome. And beyond knowing that going through this has left me feeling like such a badass woman, I think there is nothing more important than being honest and vocal about my disease. I’m writing this for my fourteen year old self who was ashamed of her pain, who believed her body was fighting against her, and who was desperate for answers. She needed someone to advocate for women’s health, she needed to be better educated in women’s health, and most of all she needed to know she was absolutely not alone in this.

I came home to my childhood room after being discharged. My mom helped me up the stairs, made me my favorite comfort cornbread, brought me endless hot tea, and cleaned up every ounce of bodily fluids my body let out without my consent. I am everything that I am because of her and I will never forget what she has done for me, for the sake of my healing. I came home delirious, on a pharmacy of medication, with a neurogenic bladder, a defective pain pump, and light headed from all the blood loss. I pulled a 12 inch tube out of my stomach while being guided by my surgical resident on the phone, I had numerous close calls but never ended back up in the hospital, and after not being able to pee on my own for about a week I took my own catheter out following the instructions from my nurse. As weird and wild as this watered down cliff note version sounds—I have never been more proud of myself.

I spent a really long time trying to get back to who I was before my health spun out of control. I longed for normalcy, but even more I just wanted to feel like myself again. It’s taken a lot of time, a lot of therapy, and a lot of introspection to separate myself from my pain. My pain has shaped me in so many beautiful and brutal ways, but it is not my identity. I had to learn that my pain transforms me into a version of myself that is not who I am at my core. When I’m in pain I am quiet, I reserve all my energy for necessities, I retreat and pull away from people, I spend a lot of time inside, a lot of time asleep. But who I am when I’m not being squished by the weight of my pain is the true me. The me who wants to only be outside, who wants to spend all her energy on people, on creating anything, on dancing no matter how slow the song is. I have wasted so much time on people and on things that I thought could pull me back to who I was when all along I just needed to let go—to run into my pain, into my disease, into my mental illness—so I could face it head on and find unbreakable strength. So I could come out of the dark and feel the warmth of the sun on my skin and know that the light I had been so desperate for all along was inside of me the whole time. All I needed to do was look inside of myself, I was right there all along.