I've been thinking about this topic for a while now, debating whether or not it's worth sharing publicly. It wasn't until a recent conversation with a friend that I realized I do need to write this post not only for me, but for anyone who may benefit from my transparency.
A few minutes into our phone call, my friend told me he had intentionally not been in touch with me since I came back from Europe because, "Your life is clearly so perfect. You're traipsing around France, living your dream, writing, taking beautiful photos. I didn't have anything to compare to that." I choked up and took a breath. "Why does comparison matter? And perfect? It was the fucking hardest thing I've done in a long time. Do you have any idea what it's like to travel in the midst of acclimating to an autoimmune disease, new medications, impossible AIP dietary restrictions, jet lag on top of chronic fatigue..." "No."
Hashimoto's, in a nutshell, is an autoimmune disease that attacks the thyroid gland. Our thyroid is responsible for metabolism, energy, growth (hair, nails, bones), stress management (in partnership with adrenal glands), muscle stength and fluid joints, brain function, etc. So...kind of important. This article in The New Yorker is one of the best accounts I've read. It's hauntingly similar to my situation.
My primary symptoms are/were chronic fatigue (no matter how long or how well I sleep), adrenal failure (intense anxiety, very little resilience to stress), sore/weak/atrophied muscles, inflammation in my face, hands, and feet, brain fog, no metabolism and rapid weight gain*. Sounds awesome, huh? Sounds totally manageable to hop on a plane for a travel writing assignment and navigate 18-hour days in three foreign countries for two weeks, right? I also picked up a new/different/additional thyroid prescription the day before I boarded the plane. Five times a day I take anywhere from two to nine pills, some courtesy of big pharma, some herbal/raw food supplements meant to balance a complex web of issues related to a thyroid that doesn't function. To have pills interacting with my body, with each other, with every ounce of food I put in my body...it was less than ideal to manage that outside the comfort of my home.
Back to the conversation with my friend, we eventually reflected with each other on the nature of social media and vulnerability. Of course people saw gorgeous photos of my trip. Of course people read lovely accounts of sunny days shopping for honey at farmer's markets in Nice. As opposed to what? Should I have posted Instagram selfies as I'm vomiting outside the leaning tower in Pisa because my body is too fatigued to function properly and walking two blocks made me sweat and shake like I was having a epileptic episode? Not an awesome Facebook status. Perhaps some people would, but it's not my style. Our conversation became about what we show people online and what we keep to ourselves; what we curate, in other words. I curate my life as a series of adventures, as this site articulates, and those adventures are usually snapshots of the sunny side of the street. But...
To honor that conversation with my friend, and to offer vulnerable transparency to the larger social media space, I'll admit that behind the scenes, it was incredibly difficult to travel this early on in my healing journey. The first four days of the trip, basically the whole of Italy, was a total blur of pain and nausea and blinding fatigue. Why even talk about this? Maybe someone will benefit knowing that jam packed international itineraries are still possible with Hashi's and adrenal fatigue. Maybe someone will benefit knowing that even as I'm living my dream, I'm still balancing the nightmare of chronic disease. Maybe someone will feel empowered to share the good and the bad aspects behind their otherwise polished social media posts. Maybe that someone is only me, but that counts for something.
Why did I push myself through the experience? Why go through with it? Well, not only was it a dream job, hanging out with a press corps of journalists from all over the world, it's also aligned so perfectly with my Core Desired Feelings. When I heard the diagnosis that my thyroid is being attacked, metaphysically speaking, I knew I desperately need to express my truest self and live my truest life. I plan to quit my job and travel the world longterm. There's power in that declaration alone. This trip felt like a post-diagnosis practice run. It was enlightening, disheartening, inspiring, instructive, and emotional as hell. There were days when I was convinced there's no possible way for me to travel with these symptoms. There were days when I knew this is actually the only thing that will truly heal me.
I'll soon transfer to this site the daily articles and photos I posted on The Avid Cruiser website during the trip. Stay tuned!
* I was tired of being debilitatingly tired and decided to finally fight my way through as many doctors as it would take to get it solved. It wasn't until I gained 40 lbs in two months, while exercising 30-60 mins 4x/week, that I reached my final straw. I worked my way through six different doctors to get to the bottom of it. Most wanted to treat symptoms and refused to run the proper series of thyroid blood tests. One endocrinologist told me he didn't believe that I ever went to the gym and gave me the number to his "lap band guy." Asshole. When I was finally diagnosed, I sent him a letter that said I have a full-blown autoimmune disease. I told him he's irresponsible and shortsighted for not running the tests I requested and that my insurance would pay for. I sarcastically (and immaturely, but it felt good) thanked him for wasting my time while I only got sicker. I gathered hardcopies of my medical records and told him to cancel my scheduled follow-up appointments. A version of that ordeal happened with two of the other doctors along my path to a diagnosis. Ugh. Lesson: Keep fighting. Only you know what's going on in your body. Only you. The authority of medical doctor's (authority in general) has limits. Doctor's only deserve respect equivalent to the assistance they render (which is a true statement of anyone claiming a position of authority). Keep fighting.