Some of you may wonder what happened to me. How did I suddenly end up bedridden, antisocial and on disability? And I understand because I was once judgmental too. I thought I was appropriately judgmental, of course, but little did I know. Little did I know that chronic invisible illness, fatigue and brain fog were actual entities. In fact, I once know someone who claimed to have fibromyalgia. In my era of medical training, I grew to associate this illness with people who had trouble coping. In my era of training, there was a lot of judgement regarding those who seemed “crazy” and certain labels became code words for describing them: fibromyalgia, IBS, chronic pain…So inappropriate, so pathetic, so sad for those patients. But it rubbed off on me, naturally, as I had to deal with so many difficult people every day. In fact, it wasn’t until I was diagnosed with sarcoidosis and all it’s weirdness that I began to question my attitudes.
By the time I was diagnosed, I had already switched to primary care (from anesthesia) because I couldn’t get through the day without falling dead on the sofa mid afternoon. Without a nap I couldn’t tackle the evenings as a proper mother and wife. By the time my symptoms forced me to go to the doctor, it had been a decade since my last checkup! I was actually scared that my complaints would be considered “crazy!” Meanwhile, I had tumors growing in both feet (I figured they were ganglion cysts), growing exercise intolerance (after being a dedicated runner for 25 years), shortness of breath while talking and eating and sometimes just sitting down at work to the point that I had audible wheezing and had to lean forward to get a proper breath! Still I pushed on, attributing everything to overwork. I continued to wake up at 4 AM to get the coffee in, run with the dog in the dark at 5 AM, shower and get to work by 6AM. By 7:30 I had to be sharp, alert and ready to put my first patient to sleep safely. I’ve always prided myself on my dedication to patient safety, making sure I was at work early enough to check the anesthesia machine properly, see my first patient unhurriedly and be as mentally prepared as possible. I’ve taken pride in NEVER falling asleep at the machine no matter what the hour and no matter how sleep deprived I was. I considered myself a competent and capable anesthesiologist with excellent training and for the most part, enjoyed my job. However, I bit off more than I could chew, never understanding how my choice of profession would end up conflicting with the lifestyle that I chose. I wanted children, LOTS of them. This feeling intensified with the birth of each child. I miscarried twice, once at 16 weeks. Now I wonder whether the miscarriages were already a sign of impending illness as my prior four pregnancies and deliveries were entirely uncomplicated. I had endured severe morning sickness which only got worse with each pregnancy, all the while working full time. My coworkers used to compare my color to the green rooms in the operating room! I even received a speeding ticket once (driving 90 in a 65 zone) because I was pumping breast milk in the car while trying to make it to work on time! At home, I was the perfect mother, cooking wholesome meals, giving each child whatever quality time I could muster after harboring tremendous daily guilt for being a working mother. I longed to be home in the mornings to cook breakfast and see my children off to school. This never would happen until it was a bit too late and my youngest was already 10. For one year, my children had to walk to school, rain or shine because there was no parent at home in the morning. Their 14 year old sister was mother, getting everyone out the door, with lunches and locking up the house. The children would often come home to an empty house after school, or to my husband, but not to me. I was still at work. There was no predictability because, as time went on and our medical system began to crumble, my hours got longer. The hospital closed some operating rooms to save money by hiring less personnel. This meant more cases that went later in the day in the remaining rooms which translated into an ever lengthening work day. An anesthesiologist cannot leave the operating room in the middle of a case until there is another anesthesiologist who can provide relief. Yes, that means that even if I was hungry or had to go to the bathroom, or was sick, I had to wait. The schedule eventually became too much for me and I realized that I couldn’t continue. By that time, in addition to the tumors, trouble breathing and exercise issues, I was being woken in the middle of the night multiple times with room spinning vertigo, nausea and headache. At one point I was even hospitalized with meningitis (aseptic-not due to bacteria or virus but apparently common in sarcoidosis).
So for fun, I started googling jobs that physicians can do outside of their training. It didn’t take long to receive an email about a job caring for the homebound elderly. Any physician background was acceptable. And so I moved on to the next phase of my career-geriatrician! And I loved it! I grew to love the dementia patients, felt that I could contribute so much to their end of life happiness and my life became a lot more manageable as well. As long as I cared for my quota of patients, it didn’t matter when I arrived at work. I finally got my dream of being at home in the morning and after school as well as carpooling my children. They were happy and so was I! I literally had the perfect job.
Then, about a month later, I woke up with a swollen face, and my story of sarcoidosis began. Still, I managed to work, see my quota of patients, be a mother and wife despite literally 2-3 doctor appointments/myriad of tests every week for the next two YEARS! I was progressively getting worse, more tired, stopped running altogether and started showing up later and later at work. Eventually I couldn’t get to work until the afternoon due to the paralyzing fatigue! At that point, although I was caring for my patients, I couldn’t keep up with the paperwork (which required as much as 5 hours per day), and I was asked to leave the job until I got better. I have always been a reliable, conscientious worker who performed above and beyond my job expectations. I was in the top 10% of my medical school class in one of the top schools in the country. I did a fellowship at Stanford University in order to beef up my understanding of critical care so that I could better care for the really sick patients who needed surgery. It was so unlike me to be judged incompetent. But my husband still says that nobody would have continued to work in my condition like I did, and he had constantly encouraged me to quit which was unconscionable to me.
So now, as I find myself in bed most of the days with “brain fog” and “fatigue” and all those elusive complaints that I have previously judged as “crazy,” I’ve learned my lesson. I find myself looking at all people differently. Almost removed from the world, looking down at all the poor people just buzzing around in their daily lives, trying their best to get it all done right. I don’t judge the guy who cuts in front of me anymore. I realize he’s having a horrible day. I am more patient with my kids, as I sometimes feel the crunch of time and the need to make the most of myself as a role model. I empathize with my husband who has been an unwavering rock in his support of me. I empathize with the nurses who are nervous to give my infusions because they are taking care of a doctor and giving me dangerous medication. I feel for them when they miss my IV…more than once. I remember that happening to me in my old profession and how badly I felt each time. I empathize with my friends who are stuck with a friend that they don’t know how to address, or what to say, or what to do, or afraid to say the wrong thing. I want all these people to know that I understand they are doing their best and that whatever they say or don’t say is not judged by me. I understand that some people can’t deal with other sick people and that some people say the wrong thing by accident or on purpose, I don’t judge anymore because it’s hard enough to be a human being who wakes up daily and tackles their life the best they can. I really understand.