Write Your Own Ending
My Autoimmune Story
The alarm buzzed at 4:30 am, reminding me it was time to get ready for hospital rounds. My feet ached as they hit the hard wood floor of my mom’s home. The fatigue hit so hard that coffee barely took the edge off, but I headed straight for it anyway. The stiffness in my joints felt like they were glued shut, so the first half hour was slow stretching, in hopes that my body would behave in some semblance of the way it used to. Or at the very least, get me through the day of holding surgical instruments without being ‘found out’ that my body may not make it to residency. Slowly, my joints began to loosen up, and I pulled some scrubs on and made my way to the driveway. As my mom turned the key in the ignition of my car, I was reminded of just how dependent I had become. The stiffness in my red, hot, swollen hands would not allow a simple task like this. I was a 25-year-old woman, and my mom was starting my car every day.
About a year prior, I was having the time of my life in my 2nd year of medical school. I had dreamt of becoming a doctor my entire life. I was taking courses full time and working in the evening to cover my bills. I was going to CrossFit every morning, no matter how much sleep I got the night before. I was so busy that I didn’t have time to think about anything that might feel like stress to me now. I had had a serious battle with illness when I was younger, and I was determined to only see the positive from there out. I looked like the picture of health, and looking back, I thought I was the picture of health.
After one particularly busy week of classes, I got an upper respiratory infection, which was not unusual for me at that time in my life. But this time, my fevers continued when the other symptoms faded. And a few weeks later, I started waking in the middle of the night with debilitating hand pain. I had to adjust my workouts because my hands wouldn’t grip the barbell anymore. I developed a level of tired that I had not experienced before, I started to get rashes on my body, and my joints got red and swollen. After a few months of denial, my primary care doctor ordered bloodwork. This confirmed that I had the antibodies for Lupus, which, put in layman’s terms, is an autoimmune disorder where your immune system attacks itself in various places throughout your body.
I was referred to a Rheumatologist, a specialist in joint diseases. I walked in feeling hopeful, like this may finally give me some answers. I asked questions of how this happened, trying to understand what got me to that point, and he simply said, “genetics and bad luck”. When I asked if certain foods or exercise might help my symptoms, he actually laughed at me and told me that nothing alternative has been shown to help. He told me there was no cure and my disease would progress over time, but with medications we could hope to slow it down. Then, he matter-of-factly pulled out a prescription pad and told me that I needed to take a pill to suppress my immune system. When I asked how long he thought I might need to take them, he said “always”, and walked out of the room.
I left that appointment feeling as powerless as I had ever felt in my entire life. My body was attacking itself, and the profession that I had dreamed of becoming a part of for my entire life offered no comfort and no answers. In hindsight, it was the day my life changed forever. And, as painful as those years were, I will forever have gratitude for my diagnosis and where it led me.
I was raised to be curious, to be open, and to trust my gut. I was trained in Biology and Medicine, and my mind sought to solve problems. And despite all signs pointing to a dismal future for my health, I knew in my gut that it did not make sense for my body to behave this way. If I had unknowingly created a series of actions that confused my immune system into attacking my own body, I had to have some power in downregulating that process as well. So, I got to work learning how to heal.
I monitored my blood work frequently to assure I was not in immediate danger of organ damage, and I respectfully told my physician that I disagreed with his plan.
The next few years were filled with lots of trial and error. I swallowed my pride and moved back in with family to get help so that I didn’t have to drop out of med school. I gave up my plan of becoming a surgeon, because I was scared the stress would be more than my body could take. I read everything I could get my hands on about autoimmunity, and the stories of people who had become healthy again. I stopped intense workouts and started practicing yoga. I gave up processed foods and began to fill my body with nutrients. I learned how to meditate, and over time, learned how to process and release traumas I had been through. I prioritized sleep and recovery and started to take naps every afternoon. I learned how to say no to social obligations when I didn’t have the energy to show up fully. And more than anything, I got quiet enough to actually hear what my body was trying to tell me. I accepted that my life and my body had changed, and I stopped fighting it. I decided to listen to what it was trying to teach me, and I learned what it needed to heal.
The process was slow, and it was painful. There was nothing glamorous about replacing social outings with my friends with afternoon naps and an hour of evening yoga in my mom’s living room. And it was not exactly appealing to swap out my evening glass of wine with tea (here was born my mantra nothing tastes as good as feeling good ). And more than anything, I missed being able to push my body hard, but knew fully my body craved and needed rest. There were plenty of times that I doubted myself and my decision. When a fever would spike for no reason mid day, or when it hurt to take a deep breath in, or when my throbbing joint pain awakened me from sleep I wondered, was this it? Was I going to get my bloodwork back saying my organs were failing? Or had I contracted some obscure infection from the hospital because my immune system was too weak to fight it off? But little by little, things began to change. The tiny victories felt enormous, like when I was able to open jars again. And the huge ones, like going on my first long run in two years, brought me to my knees in joy.
Once the healing began, it took on a momentum of its own. My body found energy it had not felt in years. My brain was clear, and critical thinking became easy again. My rashes disappeared, and I stopped having to be careful in the sun. Exercise began to feel like fuel for my body again, and my joints moved freely and painlessly. Yoga and mindfulness became a foundation of my days, and brought with them a newfound contentment. It was not that I had slowed the disease, but rather that I found a whole new level of health. I was no longer getting through each day as efficiently as possible, just trying to survive and avoid pain. But I was actually living, taking in each moment of this new life and body with gratitude.
Today, I haven’t been on immune modulating medications for more than a decade, and my blood is free of autoimmune antibody markers. My level of inflammation is undetectable. I run around the lake in my neighborhood whenever I feel like it, I lift heavy weights, and yoga is still the most healing practice in my life. When hardship or fear arises, I no longer try to avoid it, but have learned to do my best to sit with it until the waves settle. I suppose I will always be learning that part. What I could not see when I was in the midst of my illness was the immense role that stress (or the avoidance of), was playing in my immune dysfunction. I’m not sure anyone could have convinced me of this before I felt it for myself, but surrendering to uncertainty and being open to a different outcome changed my entire trajectory. The belief that my body truly could heal, empowered me to stay committed to the actions to make that outcome a reality.
My journey in healthcare as a physician was forever changed by my experience as a patient. I now find myself exactly where I need to be in my field (hilarious that I once thought I needed to be a surgeon!). My top priority to this day with every patient interaction is meeting my patients where they are, and empowering them to affect change in the outcome of their health. I know for a fact that the changes I made in my life shifted my biology to an environment in which my immune system could thrive. I made these shifts through years of stumbling and guessing, learning in micro moments over years what my body needed. And rarely if ever did I feel like I had support and guidance from the medical community. A couple of years ago, I read my personal genomics report and tears filled my eyes. This report detailed in minutes what it took my body a decade to understand intuitively. I now have the honor of helping to show my patients how they, too, can thrive, and I will work every day to show up as the doctor that I needed most.
If there is one thing I can leave you with, no matter where you are in your health journey, it is to remember the power you have in your outcomes and follow your intuition. You are the author of your life, and of your health. Steps each day to create joy and peace and health, no matter how small, will never take you in the wrong direction.
A picture definitely doesn't tell the whole story, but the before and afters below serve as my reminder of just how much say we have in our health.
