My story

Disclaimer: This article was originally intended as an Instagram post, but during the process, it became evident that my message requires much more space.

Dear reader, this post won't be fabulous, dopamine-rich, nor have a happy ending, but painful, honest, and I believe, empowering as well. Its very untypical nature will probably cause an instant drop in interest, and I risk losing all my 5 and a half followers. Look how brave I am! As it comes as a post with super-long, certainly not a nice text instead of a catchy, exciting reel showing the full figure under 8 seconds. Even though it's about me, I think many of you could actually identify with it, and it may give you some courage and inspiration.

The first truth: I do hate social media. I find this superficial show of perfectly filtered people and places toxic. Even those seemingly professionally dedicated accounts to art, science, or whatever are mostly actually about gossip and selling one's privacy and persona for followers (or other) gain. My own account is proof where the posts showing me (or my sexy husband) received the most likes and views, not the ones with actual art. Sad, isn't it? Now you may raise your eyebrows angrily with the question: So why are you even here, you little hypocrite?

The second truth and the answer to the above question: As with everything, reality is much more complex. There are also (few) strokes of different colors than the black I just described and accounts that somehow managed to deliver meaningful content without selling themselves short. My dream is to fit in between those and establish myself as an artist.. Although, taking into account my 5 and a half followers, I'm not sure this is ever going to happen. Every time I shoot a video of me or my art process, I feel intimidated, embarrassed, and super uncomfortable. It takes me or my poor husband about 5 times until my pain-stricken face and clenched jaw relax into something resembling a smile. But I go on because I know that worse than failing is not even trying.

The third truth: If by some chance you haven't given up reading yet and even pay attention now, you may wonder about the pain-stricken face. The truth is I'm sick, and pain is my ever-present companion. And now I'm finally getting to my point.

Today, it's more than 3 years since my first COVID and entrance to hell. I suffered with pain of such intensity that I was (am) completely covered in sweat within seconds, shaking, crying from desperation. I underwent tons of unpleasant and painful procedures to get a diagnosis, but was left with nothing, and gradually, doctors were just trying to get rid of me. I had several trips to the emergency room where I was treated like some oversensitive hypochondriac except for one time when I arrived in a honking ambulance car, and 4 people had to pacify my violently cramping body and unhuman shrieks I didn't know I was able to produce. I'll never forget the moment when I was biting my hands to prevent myself from further screaming as I was waiting for an analgesic IV to finally kick in. A few hours later, a doctor dispensed me with the golden advice to visit a gastroenterologist the next day, as I hadn't previously, multiple times...

About 6 months since this craziness started, I suspected that it could be endometriosis. From my professional background in clinical research, interest in human physiology, and a best friend suffering from this nasty illness, I had solid base of knowledge about symptoms and risk factors. I had it all - symptoms and risk factors.

Here I am sitting in the ambulance of a famous endo-specialist, sweat dripping from my face and armpits, belly burning and bloated, only to receive the message: "It's not possible you have pain of such extent you are describing if you had endometriosis, but I don't think you have it." Amusing, right? To be told by someone else, the man in the first place, what you can and can't feel. Another 6 months, and here I am again with a negative result from an MRI, he tells me: "You see? You don't have endometriosis, cheer up and get pregnant." I tried and had 2 miscarriages while experiencing new levels of inferno. At that point, I wasn't able to work, and painting was my only escape from reality, where days were blurred into a painful battle to keep at least some level of dignity, rise from the bed, take a walk, and be in touch with my loved ones.

Another year passed, and I was getting worse. I tried literally everything - different diets, supplements, acupuncture, ayurveda, and enemas administered by my husband (you already have a picture of what a saint I have at my side), visceral therapy, brutal detox, finished by a 4-day fast, only to get worse. I felt abandoned by the healthcare system, pleading for help like a hungry dog and at the same time questioning my own sanity, whether it's really possible to feel like that when everyone keeps telling me how great I look (don't do that if you know somebody who is sick and it's not obvious at first sight, it really doesn't help), and there isn't any tangible diagnosis except bacterial overgrowth in my intestines. Desperate people do desperate things, so I find myself sitting again in the waiting room of an endo ambulance and directly asking for laparoscopy surgery at my own risk. This time a young woman doctor doesn't protest, as she sees my calm determination and probably dripping sweat and shaking hands as well.

Two months later, and I wake up after surgery, a woman doctor at my bed explaining that there were violet string-like adhesions in my pelvis, abdomen, and on the liver, the right ovary and fallopian duct grown into the abdominal wall, all this parade connected with long adhesions to the liver. It's called Fitz-Hugh-Curtis Syndrome, and it's a very rare condition where bacterial infection causes inflammation in the pelvis, spreading to the liver capsule. It's very painful and severe, and yes, you guess right, I overcame this hell on my own when sent from emergencies as a happy, healthy girl. The good message is that it probably isn't endometriosis (histology will show), and I should feel better. Pure happiness, that's the feeling arising in my chest, knowing that I'm not a hypochondriac, surgery was a good idea, and my problem is probably fixed by burning the lesions. I jump on my feet just a few hours after I was cut and gutted and go to the bathroom without assistance, patient lying next to me staring in awe at how it's possible I'm that mobile and at my senses in such a short notice. The sad truth is I feel pain like this all the f*ing time, and fresh cuts on my belly are nothing against the stabbing I feel in the area of my liver 24/7. The next day, I walk from the hospital on my own and take a tram with my husband, stopping by a grocery shop on the way because, yes, this is my standard - to feel like I'm dissected alive and act like I'm having a normal life.

Okay, this is longer than I expected. Are you still here? Because I am, and 6 weeks later (the pain gets worse, I get COVID again, which knocks me on my already shaky knees), my phone rings. A call from my gynecology clinic, an empathetic voice of the doctor at service announcing: "I'm very sorry, you have endometriosis, we just got your histology."

RELIEF, that's what I feel. Because I knew from the very beginning that something is utterly wrong with me, and not knowing what or, worse, doubting myself was so frustrating, not only for me but for my loved ones as well. The diagnosis of endometriosis takes between 7 and 10 years. Mine took 3, left me desperate, abandoned by the healthcare system, questioning my integrity, and unemployed.

But since I finally know what I'm dealing with, I also feel proud of myself that I didn't give up and kept knocking on the closed door, not once but several times, until I got my diagnosis. On this painful journey, I was tested to my very core, and I found that no matter what, there is joy, curiosity, immense strength, creativity, and love transforming into my art and relationships I value beyond everything else. There wasn't a day I felt alone; my family and friends were always here to take huge chunks of my suffering on their backs. I have become the person I hid under the polished mask of desired appearances and behaviors because, in a state like this, you just don't have the capacity to play any pleasing role. And I started to value and love this brave girl, even though it's still a process.

Wow, it looks like a happy ending at the end! I actually don't know; we keep changing plus and minus signs to life events throughout its course. My message is that no one could ever tell you what and how you feel or should feel, that you are okay if you don't think so, and that there is never enough empathy and care to which you are entitled. Listen to yourself in the first place and go and knock on that door until you won't get the answer you need to move forward.