Chasing Answers: An Update On My Life
Updated: Jan 18
2019 was a difficult year for me. As many of you know, I experienced some major health issues that had me in and out of the hospital throughout the year. And for most of 2019, I didn’t have a diagnosis.
When someone gets sick on TV and in the movies, a doctor sits them down, gives them a diagnosis, and the fight begins. The reality is much less inspiring. Without getting too in-depth, it involves a lot of blood samples, biopsies, MRI scans, and CT scans. It also involves a lot of diagnosing through treatment and late night trips to the emergency room when that treatment fails and the side effects become too much for your body to take. Many times, it involves you crying, and sometimes, it even involves the doctors crying, because this might be something that can’t be bandaged up.
This process was especially frustrating for me as a scientist. I always had faith in modern medicine and the scientific method. When my doctors struggled to find a diagnosis, it felt like those ideas had failed me when I needed them most.
My search for answers started in 2013 when I began experiencing chronic sinus and ear problems. Over time, I developed severe adult-onset asthma, along with other random symptoms that affected nearly every organ system in my body. After six years, I finally received a working diagnosis of Eosinophilic Granulomatosis with Polyangiitis (EGPA), also known as Churg-Strauss Syndrome. If you decide to Google it, I promise you it is 1000x scarier on the Internet than it is in real life. Thanks, WebMD.
Now, with the right diagnosis, I’ve been able to undergo the proper treatment and am on my way to being in remission (symptom-free). There is a comfort, justified or not, that comes from knowing what you are up against. If you know what you are fighting, you have a better chance of defeating it.
I’ve thought a lot about making my diagnosis public. Especially since sharing this kind of information has its repercussions.
Ultimately, I chose to share this with you because I believe that people should not have to hide conditions that impact their lives. So many people have their own stories of struggling with illness, their corresponding journeys with the healthcare system, and getting diagnosed. They should not have to suffer in silence, not knowing if anyone else shares their experience. My journey took a long time, over 6 years from the start of my first symptom to diagnosis. But now, I am here and healthy enough to say that there is hope.
Additionally, while I was undergoing intensive treatment, I made the decision to end my marriage. I am so thankful for the assistance and privacy I have been given during this time. Throughout the chaos of this past year, I was living day by day. Only now have I had time to sit and look back on what I took away from it all.
Because for a long time, I really thought getting a diagnosis this past year would bring me solace. And while it did alleviate a lot of my anxiety surrounding the uncertainty of the prognosis, it didn’t make all of my problems go away. I still had to learn how to love a body, my body, that by all my own measures had betrayed me.
More than anything else, it made me think about love.
Much of what we consume via Instagram, Netflix, and every other form of media tells us that love hurts. What I learned from this past year is I’ll never be quite certain what love is in the affirmative. However, I know what love isn’t, and what it never does. And love never hurts. Rejection, loneliness, and loss hurt. Love is never violent, and it is never a weapon. The only thing I know with any certainty is that it is a mutual respect, be it between siblings, friends, lovers, or oneself.
I also learned that love often shows itself in weird places, especially when we need it most. During one of my hospitalizations, I had a very close call where my life was saved through the quick action of one of my doctors. After everything had calmed down, he sat at my bedside and said, “I’m really glad you’re here.” It took me a while to understand the gravity of what he said to me that day. Until that moment, I didn’t realize how much of a gift it was to simply be.
What I want to say is this: to everyone who has been following me on my journey for the past year, checking in, FaceTiming and calling me when I was stuck in the hospital, helping me in moments when I needed it most with no questions asked, or providing support from afar, thank you. Thank you for showing me what love really is, even when I didn’t always understand.
Granted, with any chronic illness, the struggle is never over. I have days when I feel normal, and I have days when each breath takes all the strength I have in my body. But I will never give up. Because in each moment, I’m really glad to be here with you.