For this month's Pastry Box, I initially decided to write the story of my somewhat unusual path into tech later in life. March is also Global Endometriosis Awareness Month so I had also planned to write separately about my experience living with that disease. But, the more I thought about each topic, the more I realized that they are inextricably intertwined. The long and winding road that got me to where I am today would not have been so long and winding if not for the fact that I struggled for over a decade to overcome a severe, debilitating, yet invisible and largely unknown illness.
Endometriosis? I thought this was a tech blog?
You probably know someone with endometriosis! Millions of women - an estimated 11% of the female population worldwide - have endometriosis (or endo), but because the disease affects the female reproductive system and menstruation, discussion of its symptoms is generally taboo, research into the disease is shamefully underfunded, and myths about endo abound. Because of this, the vast majority of women with endo go undiagnosed and untreated for an average of 10 years or more, negatively impacting their quality of life.
The only way to combat this problem is to spread awareness of endometriosis, to make the topic less taboo. My story is one of triumph over adversity - but only because I was diagnosed. If I hadn’t finally been diagnosed and treated, I would not have been able to live a normal life or have a stable job, let alone a successful career. So, even though this subject matter might seem unrelated to “tech”, or you might even think it’s gross or TMI, I ask you to please read my story and learn about my disease.
Endometriosis is a condition where tissue similar to the endometrium - the tissue that lines the inside of the uterus - grows outside of the uterus, forming lesions on the surfaces of tissues and organs in the pelvic cavity. The rogue tissue causes internal bleeding, and the body reacts by forming scar tissue, sometimes even adhering organs together. The symptoms of endo are myriad; painful abdominal cramping (dysmenorrhea), long, heavy, and/or irregular periods, chronic pelvic pain, infertility, gastrointestinal problems, and higher rates of reproductive system cancers, to name just a few. It is unknown what causes endometriosis, although there are several possible theories.
My story begins
One of my first memories of getting my period around age 13 or 14 is of lying curled up in the fetal position, nauseous, unable to move, crying and moaning from the severe pain that wracked my body in intense waves of pain that started from my abdomen and radiated outwards into my back, legs and chest. Researchers have found that the pain from dysmenorrhea is as bad as a heart attack.
My parents and I tried desperately to get help, but like most women with endo, my symptoms were ignored and I was gaslit by my doctors for 11 years before I was finally diagnosed. When I was 15, I had an episode where the pain was so severe that my parents took me to the ER. The triage nurse said I wasn’t showing any symptoms of a serious problem and sent us home. My pediatrician listened to my symptoms and said that my cramps were perfectly normal, I had low pain tolerance, and that it was all in my head. They made me feel like I was crazy and a liar. I stopped telling doctors anything after that.
It gets worse
At first, the severe episodes happened sporadically, but as I got older, the frequency and intensity increased. I know now, that this is what happens to women with endo, as the lesions in your abdominal cavity grow and spread and bleed with every menstrual cycle, forming new scar tissue, and causing ever more severe inflammation. I took more and more sick days, but managed to keep afloat through high school. I developed a reputation as a slacker - smart but undisciplined and lazy.
Once I got to college, every period, every month, resulted in anywhere from 12-48 hours of total incapacitation. I missed classes and deadlines and tests, but what could I say to my (usually male) professors? “I need an extension on my project because I had my period and the cramps were so bad that I was in the fetal position unable to move for 36 hours.” Women learn from a very young age that we can’t talk about our periods - they are shameful, disgusting, something to keep secret. Even my doctors didn’t believe me when I told them the truth, so I lied. I said I had food poisoning, or a cold.
To make matters worse, my allergies worsened over time, and I started coming down with more frequent upper respiratory and sinus infections. In hindsight, these are symptoms of chronic immune system dysfunction, which women with endometriosis are more likely to have. I often came down with colds immediately after my period ended, when my immune system was overwhelmed by acute inflammation. Even the most minor colds turned into sinus infections or strep throat, and I’d be knocked out for two solid weeks, many times a year.
Throughout my teens and early twenties, I spiraled deeper into depression (another frequent companion to endometriosis). The unfairness of it all nearly overwhelmed me - the years of gaslighting, the frustration of knowing that doctors and teachers and managers wouldn’t believe me if I told them the truth. Knowing for years that something was deeply wrong with me, but not knowing why or how or if I could ever make it stop. My own body was destroying my life. I can still feel the visceral pain, sadness, and frustration of it all, many years later.
It got harder and harder for me to complete my school work, or even care about it. After a few semesters of getting suspended for my poor grades, then re-admitted, I eventually gave up and dropped out of college.
You don't get sick time in the service industry
After I left school, I worked a whole bunch of shitty, low-paying retail and customer service jobs until I inevitably got pushed out or fired due to my poor attendance. From when I started working part-time at age 16 until age 25 I had thirteen different jobs; I was fired from six of them.
My last job as a customer service representative I managed to hold onto for two whole years. Thanks to the invention of the ThermaCare wrap - an air-activated heating pad that I could wear underneath my clothes in place of an electric heating pad - I was better able to manage my symptoms. I kept using the maximum number of sick days, but I excelled at the job, I got promoted twice in less than two years. I even had a 401(k) and health insurance for the first time!
With my new health insurance, 11 years after my symptoms first appeared, I finally found a doctor who listened to my story and confirmed that my experience was indeed far from normal. She said that I most likely had endometriosis (you can’t be fully diagnosed until you undergo surgery to confirm the presence of endometrial lesions) and prescribed hormone treatment - I would need to take birth control continuously, with no sugar pill breaks. This would stop me from getting my period each month, hopefully preventing the severe pain and cramping from occuring.
The day after I was diagnosed, I met with my manager and told her the truth - that I had been lying about most of my sick days, that the real cause was this disease, endometriosis. I explained the symptoms, apologized for lying, and said I would hopefully be getting better now. I naively thought she would understand.
They fired me the next day.
I was utterly devastated. Just when it seemed like things were finally looking up for me, everything fell apart. Looking back, it was a blessing in disguise that I hit rock bottom right at the time that I was finally poised to take back control of my life. I swore I would never again work another shitty customer service job, and started making a plan to turn that dream into reality.
I start all over again
First and foremost, I needed to go back to school and finish my undergraduate degree if I wanted to have any chance of getting a decent job that would excite and challenge me. Finishing my degree in archeology wasn’t really an option - to progress in that field, you need a masters or PhD, and I was looking at completing my undergrad at about age 30. I needed something that would give me a viable career immediately upon graduation, so I decided to give Computer Science a try.
I had made my first webpage as a college freshman in 1995 (complete with patterned background and “under construction” gifs) and I had continued to fiddle around with building sites whenever I had the money to cover the cost of an internet connection with hosting space. I thought that maybe I could take this hobby and use it to get a job in a field that interested me, but would require far more schooling than I could commit to - after all, everyone needs a website!
Once I chose computer science as a field of study, I started researching continuing education programs in my area, but I still had a problem: I couldn’t afford to pay for it. I needed an employer that offered tuition assistance as a benefit. Fortuitously, I came across a job listing for a position at Harvard University, and noticed down in the fine print that university employees could take evening classes at the Extension School for a significantly reduced price. Even better, their CS program offered a wealth of practical courses that taught real-world skills in addition to theory, getting me closer to a real job as a web developer after graduation.
I had a new goal, but first, I needed to get more office experience, so I signed up with a temp agency and worked as a receptionist and administrative assistant. After a few months, I had enough experience that I was able to get a full-time, permanent job as an administrative assistant at Harvard, and I started taking classes at the Extension School at night.
I graduated four years later, at age 30, and started my new career as a web developer.
Success! (I think)
Ten years later, I’m now a staff engineer at Etsy, and I’m writing books and speaking at conferences. I’m successful beyond anything I could have imagined 20 years ago.
Not to say it was easy. Even though I have the menstrual symptoms of endo mostly under control, I still struggle with colds and chronic sinus infections, especially now that I have young children bringing germs home. Taking birth control continuously for many years at a time isn’t without its own side-effects, but I would never have been able to live a normal life, let alone the successes I’ve experienced if I hadn’t finally gotten treatment.
Five years ago, I underwent laparoscopic surgery to find and remove the endometrial lesions from my abdominal cavity. My surgeon, a world-renowned specialist in endometriosis, said that surgery would take about an hour. It ended up taking nearly three hours, the lesions were so wide-spread throughout my body. When he told me in post-op that the location and size of the lesions were consistent with the most severe pain symptoms, I cannot describe the relief I felt. Finally, I knew beyond a doubt that I was not crazy, it was not all in my head.
There is no cure for endometriosis. This disease will be with me for the rest of my life. The lesions will continue to grow back over time. I will need to continue hormone therapy until I reach menopause, possibly beyond. I get treatment for my allergies, but I still get sick much more frequently than the average person, and I probably always will. Even as I write this, I've got a cold. But now I have unlimited sick days and a flexible work schedule, so I can make up for lost time. Tech is a great field for folks like me with chronic illnesses.
Endo is passed down genetically, so chances are quite high that my now-7-year-old daughter will have it too. The only way to make sure that she and the millions of other women destined for this disease do not suffer needlessly is to spread awareness of this disease, to encourage more research and education, and to break down the patriarchal taboos against menstruation that directly harm women.
If you’d like to learn more about the fight against endometriosis, please visit:
Endometriosis Foundation of America The worldwide March for Endometriosis, March 24th 2018 SpeakEndo.com Endometriosis.org global forum