At 19 I found myself in another walk-in clinic and it felt like every other time I’d forced myself to go. sat in front of another clinic doctor who wasn’t convinced that the human saying I’m in pain is in pain, deciding it was probably just cramps or other menstrual symptoms that were perfectly normal. I ate that shit up but it never went down smooth because it was difficult to believe doctors when they told me I was wrong about how it felt to be in my own body. Maybe it was how well I kept my composure? another requisition for blood work, which I’m an absolute pro at so I went straight to the clinic to getter’ done. A call came in the next morning asking me to come back to the walk-in clinic. So i did. adulting by taking myself to the doctors was always bitter. Before i could say good morning the doctor blurted out that I might have cancer. I’ve never seen CRP levels this high in someone ever. I’m worried
I must’ve dissociated because while the doctor kept talking, I couldn’t comprehend words. almost like an episode of Charlie brown when the parents are talking but all we hear is muffled nonsense. Cancer was the only word I could hear clearly and it was stuck on repeat. after I don’t know how long amplified words along the lines of Miss? Are you ok? Did you hear what I said? words that became audible again please find a family doctor who can get to the bottom of these abnormal results. this doesn’t look good. I felt numb. what is CRP? what does that even mean? The doctor answered my question, CRP marks inflammation, not only did my levels startle them, they startled the folks at lifelabs who ran the tests. So it’s picking up inflammation in my body? caused by what? Cancer? Is that what was just said to me? How many episodes of dizziness were experienced in that room? thoughts whirled and thrashed inside my head as I tried to absorb the possibility of cancer i tried not to throw up but honestly i might have, i can’t remember. i was distraught
I do remember calling my mum only to label that doctor nuts. how could i be as sick as was said? Once again I was attempting to convince, not my mum, but myself, that I was absolutely fine. minimize the situation and get past it as fast as you can. or quite the opposite, either way, the same doctor who told me I could have cancer told me I was fine just the other day. so i’m fine. or maybe not. my mum remained adamant that I get a family doctor, almost angry that I didn’t have one, but neither did she. my mum and I were too busy free falling through the cracks in our healthcare system. She told me to do exactly what the clinic doctor said. so I did. how was the doctor off yet closer than arguably all of the clinic, emergency and specialized physicians who would ever see me? closer to the truth than all of them combined. perhaps even foreshadowing in a sense the unfortunate nature of both illnesses which put me at risk for all sorts of cancers. having entirely no idea what was happening while it was happening. baffled or suddenly concerned
the uncertainty of my health ended the first ‘adult’ relationship I ever had. heck pretty sure it helped destroy all sorts of relationships and i take full responsibility for my part in each mess. without the ability to recognize illness in myself, I would inevitably self destruct. All I knew was physical and emotional pain so It was easier to run than be vulnerable. It was easier to shut out and shut down any possible means of healthy communication. even easier to project and forget. I didn’t grow up seeing healthy communication. My exes and old friends didn’t realize I was someone with multiple chronic undiagnosed illnesses, someone with unaddressed trauma, emotional dysregulation, and physical disease. neither did I. shocker. How could they have known? But then again, how could they have not?
can you see emotional distress and physical pain in others even if you’ve learned to ignore the signs in yourself? I was never very good at hiding any of it from anyone. in fact i often reached out for others who would stand back and narrate. I didn’t know what was going on either. I wouldn’t realize for years to come. I hated myself. It took too long to get help. It took too long to connect with other humans who have an ounce of empathy for you. humans who’ve been told they had cancer when in reality, they have endometriosis or lyme disease. both physical and both linked to cancer in the literature available to the public and on my website. The only reason I have the courage to share this is because I’m not and have never been the only one stuck in this tornado. are any of us equipped to survive that Tornado on our own? nope. I was not prepared to have to fight for my health like i did
When my online endo friendo told me they misdiagnosed her with cancer, when it was endometriosis and adenomyosis, the part of me that had been absent sprang in shouting HEY! see? we aren’t fucking crazy! I might have adenomyosis too, as well as reoccurring or flat out missed endometriosis that had been excised only 2 years ago. when i virtually meet other humans who have experienced the tornado, it’s an instant empathic connection. There’s more than one reason why I struggled with interpersonal relationships in real life. but let it be known that I could’ve used a lot more compassion and understanding while I was drowning in that uncertainty. All of these realizations make it easier for me to breathe. I wasn’t insane, or fucked up like many wrote out and taped to my back
I was always and still am mentally and physically ill. i may always be. in other words I’m sick with multiple physical diseases that if you didn’t realize by now, have no cure
While it’s absolutely unacceptable for medical professionals to misdiagnose endo or lyme as cancer, or hysteria for example, it’s even more difficult to live with the long term effects and the memories of that malpractice. Can we even begin to unpack it all? most of my life was spent convincing myself that I’m fine. I still do it all the time. that’s probably because years of mind/body disconnect will do that to you, severe emotional anguish and physical discomfort will too. When the pieces of the puzzle fit they fit perfectly. conventional medicine isn’t going to prescribe a pill for my wellness. so I’m learning to be well while I’m unwell and that’s enough. my chronically ill life has purpose
close to 30 and something is still wrong. I’m not all better. any motivation to be well in a sick society dwindles. so I’d rather rely on the universe and the healing powers of planet earth. ok, apparently i also need surgical intervention for my physical disease too but society will not paint its wellness over my life. at least not while I’m living. there is meaningful life to be lived while chronically ill without spending a lifetime attaining or searching for optimal health, and that’s beautiful
I pledge to help change this narrative for future generations of young people and by sharing my story, I’m doing exactly that. Here’s to the humans who are unwell and don’t know how to say it. i see your pain and May you gain the knowledge and tenacity to advocate for yourself and your health so you can advocate for everyone else. we can be well and unwell at the same time because we do it every single day we are alive. here’s to us
