Wow what a crazy time this has been, especially in NYC. This blog post was ready to go, then the COVID-19 crisis hit and overwhelmed everything. Fortunately, my little family is safe in Queens, and we are taking all proper precautions. Now as some medical treatment is possibly moving forward again, I’ve decided to come back to this draft. Here we go –
Did you know that when you have one autoimmune condition you have a higher likelihood of getting another during your lifetime? For me – celiac disease came first and Graves’ Disease and Graves’ Ophthalmopathy/Thyroid Eye Disease followed. Graves’ is the autoimmune disease associated with an overactive thyroid, and it sucks.
Last I wrote about Graves’ Disease I was struggling to find a gluten free medication. I’m very grateful for the generic company that clearly labels which of their products are gluten free! I’m now more than two years into Graves’ Disease, and unfortunately I’ve spent the entire time struggling to find the right medication dosage. Everything is either too high or too low, and I’m likely not going to go into remission. So it’s time to have my thyroid surgically removed. There’s a risk to the nerves that control the vocal chords and vocal function, which as a singer is the scariest thing in the world. After much anxiety (that’s an understatement), I found an incredible surgeon who specializes in vocal preservation, and my surgery was scheduled. However, due to the COVID-19 crisis, my surgery was cancelled. So now I’m waiting in limbo until it is rescheduled.
I also developed the eye condition associated with Graves’ Disease, which is the absolute worst part so far. It’s emotional, vulnerable, and impacts me every day. It’s changed my appearance – I don’t know how to pose for pictures anymore, and I don’t recognize myself in the mirror or photos. Even when surrounded by the most supportive family and friends, it is lonely to not feel like yourself. So I wait. I’ll be waiting roughly a year to have my first of multiple eye surgeries, and the delay in my thyroid surgery only means I’ll be waiting longer.
Seriously, celiac disease has felt like a breeze compared to Graves’.
This has certainly thrown me for a loop and is perhaps the hardest thing I’ve experienced. The past few months have been a blur of anxiety, so I decided to be productive and hopefully helpful. I filmed a makeup tutorial for people who have similar eye symptoms. I’ve watched tutorials, taken private lessons, experimented, and created a video of techniques and tricks that have helped me feel more like myself while I deal with the forward eye movement and watery eyes. (Please note: there are several TED symptoms, so if these techniques don’t work for you or something bothers your eyes, don’t do it). Click the image below to watch. Also, if you’re in the NYC area and are looking for a makeup artist for future events, send me a message. My bridal makeup artist was amazing and helped me feel more like myself.
While there has been much to be grateful for during this journey (my wonderful doctors, makeup artist and husband, specifically), there have been a few things that were decidedly unhelpful. And let’s face it, it can be very difficult to navigate new territory when trying to be an ally and friend, so perhaps some people will find this helpful.
The first – unsolicited medical advice. I try to be open about my experiences in order to increase awareness. When opening up about my vulnerable experiences online, strangers have immediately jumped in to tell me what to eat and suggest books from “doctors” who don’t believe in science. And when I first posted my makeup tutorial, someone thought it was an appropriate time to give me unsolicited, off-topic medical advice and (when I politely declined and said I have things covered) suggested that I’m not a good advocate for myself. I have great doctors, trust science, have done research on this for years, and am working with my doctors on a treatment that is appropriate for my needs. Being a good self advocate and helping others in the community is incredibly important, but it’s important to know when it’s appropriate to insert your opinion. Sending a stranger unsolicited medical advice when they post a makeup tutorial is not cool or supportive.
Secondly – “I don’t see a difference.” While I know they mean well, loved ones saying that they don’t see a difference in my appearance is not helpful. I see and experience the difference every day. While this kind of comment has good intentions, it’s similar to telling someone with celiac or other invisible illnesses, “I don’t think you look sick.” Instead, perhaps consider saying “Thank you for your vulnerability,” “I appreciate your openness,” or “is there anything I can do to support you?” In my opinion, acknowledging someone’s pain and vulnerability is infinitely better than disregarding their experience/symptoms, even when trying to be nice.
I’ll end with a short story – one of my fitness students is (if I’m remembering correctly) a retired eye surgeon. I didn’t know this until she approached me after class one day. Roughly quoting – “Hi Jessica, I didn’t want to mention anything or intrude, but we’re friends and I care about you. I’m a retired eye surgeon. Have you had your thyroid checked?” In regards to Graves’, it was the first time I felt seen. We had a very nice conversation, and she handled a vulnerable and emotional subject with grace and kindness.
Until next time.