Advocacy for Women
Advocate. I am the one percent. The one percent who is going to have every side effect referenced in medicine or the one percent where Murphy’s Law applies to the point it can only be comical how ridiculous the outcome has become. I was taught growing up that doctors were always right. When you were hurt or sick if you went, they would fix you. That was thirty years ago before healthcare became the for-money cash cow, towers of insurance paperwork where medicine has to charge four times the price of the service in the hopes to get just twenty-five percent of the request, close to the actual price of service. Where billing has come more complicated than the IRS tax code and educated four-year degree can’t even navigate without wanting to breakout in tears. We joke that high school should have taught us how to change a tire or balance a checkbook instead of the quadratic equation but personally, I find those both have simplistic solutions where I just want to know how to read medical billing to challenge insane charges I keep paying.
Advocate. I digress. This isn’t about complicated medical billing as I imagine families with six figures of medical debt could speak to that better than I could. This is meant to encourage women who their entire lives have been told their symptoms are exaggerated, their pain tolerance is too low, their issues will resolve themselves.
Advocate for yourself. It’s a mantra I have worked hard to instill over the last eight months and I am incredibly grateful to have a fiancé and mother who also repeat this to me. I am (or was) a relatively healthy twenty-nine year old in 2021 when out of the blue, I developed severe food intolerances or allergies depending whom you asked. I went in a six-month period of eating relatively anything I wanted to experiencing extreme internal pain and side effects after almost every meal. After much prodding by my partner and complaining enough to my primary doctor, I was referred to an allergist where two months after the referral I finally got in for an appointment. After skin testing (thankfully this has gotten much better from when I was a child!!) much to my dismay I found out I was sensitive to random food like sweet potatoes to common food in my diet such as pork, eggs, shrimp, and gluten. Wow, for someone who loved to cook and bake, my world just got really confusing.
Gratitude is an attitude I have tried to practice that while I’m not very good at, keeps me afloat in times of valley tears. I’m grateful that we live in a millennial generation that diets like paleo and keto make finding gluten free good and vegan much easier than it was even just a decade ago.
Advocate for yourself. After this exhaustion, I had hopes if I controlled my diet, I could control my health. However, a few months later, things seemed to be getting worse, where even a walk around the block left me dizzy, nauseous, and scared. I brushed it off for weeks but when I couldn’t stop throwing up after a simple indoor rock climbing date afternoon, my partner wouldn’t let me work until I called and made a doctor appointment. The doctor after a five-minute examination tried to brush it off as cramps, diet, exhaustion, pick the explanation the medical field loves to give women. I pushed, knowing my fiancé would require a clear action plan to fix this so I left with a CT referral after not accepting any of those explanations. While a dominant personality in the boardroom, I find it challenging to be firm in my personal life (please don’t ask me to cancel the cable!). It was uncomfortable to tell the doctor I wanted another opinion and it was uncomfortable to know that an imaging appointment would mean hundreds or a thousand dollars in co-pay. It would have been easier to just accept the direction to drink more fluids and get more sleep while I walked out the door. But I didn’t. It was one of the few times in my personal life I remember firmly standing my ground. I know my body better than anyone on this Earth. If I know something is wrong, then something is wrong.
Advocate! The CT scan turned up multiple kidney stones and a ruptured cyst. I could bore you with details of months of triaging but I’ll avoid and insert, more symptoms continued. We treated the source, I ended up having to self-diagnose what was causing the kidney stones since again, the healthcare system I was in didn’t want to spend more than ten minutes in a room before feeling pressure to get the billing and move on to the next patient. It’s a system we have helped create somehow but a system I am still unwilling to accept.
Advocate. After six months, my amazing but exhausted fiancé had enough and insisted after another night of throwing up, I either switch doctors or he was dragging me to the ER and not leaving without answers. So I got another referral, switched to another doctor practice and saw a physician in a more patient focused practice not just one convenient for location and my insurance. It’s a financial luxury I do not take for granted but one I highlight that made all the difference.
Advocate. In this setting, I was a new person. I was firm in explaining my symptoms and firm in setting expectations I expected answers. Firm in outlining what I knew might be my low pain tolerance but also firm in outlining what was absolutely wrong no matter what. The doctor listened. She acknowledged each step what seemed right and what seemed wrong. Then she asked permission to hug me, apologized the system had failed me, and committed we would figure it out together. I wish I could detail the support I felt along the way with her. I stopped having to advocate because she got it. Just two months later (and some exploratory surgery) we had an answer; endometriosis. So many emotions; scary because as a thirty-year-old woman wanting children, it could mean tough complications and also, relief I finally had an answer that explained every outstanding symptom!
Advocate. I’m thankfully on the tail end of my healing. I’m hopeful everything is sorted out. I also can’t imagine where I would be if I had accepted the original explanation. Or accepted the first set of scans.
Advocate. I’m grateful I have the financial privilege to keep pushing. I’m grateful I had the emotional support system to keep encouraging me I wasn’t wrong. I’m grateful I had the job flexibility to meet the doctor appointments and the kind of partner who showed up to take me to the first few scans when I was pretty dizzy and shouldn’t be driving or the parents who alternated taking me when my partner couldn’t to diagnostic exams and scans.
Advocate. Let this be a lesson that you know when something is wrong. We have a healthcare system that is no fault of the doctors but the horrific insurance scheme we have created. Push when you don’t understand. Push when you don’t agree. Push when you have hit your insurance deductible for goodness sake!
