“You look different.”
Jesse Glass describes the devastation and uncertainty she faced upon receiving a diagnosis of thyroid eye disease, threatening her future, her career and her identity. Connecting with others with lived experience, helped her to take control and turn hope into action
Written by Jesse Glass
That’s something that I heard from strangers, and friends who have become strangers. Being diagnosed with an eye disease came as a surprise, and the isolating feelings that came from it was something that I was never prepared for. When I learnt my diagnosis I thought to myself, “I have thyroid eye disease, what will the rest of my life look like? What is my future going to be?” I’m a photographer, I need my eyes, and I have big dreams still unachieved. A whole life that I haven’t lived.
For those who may not know, thyroid eye disease (TED) is an unpredictable autoimmune condition that can be, and is, quite devastating. Treatment options to control symptoms were next to none until a few years ago. There is still only one kind of medicine and it is very challenging to obtain. Yes, it may be true that only .09% of the population in the US have TED, but it is with great impact to those experiencing it. The uncommonness of it is part of why it can be so isolating. People like me, with TED, have to live with an eye condition that can cause so many disabling symptoms that disrupt our entire life. I woke up one morning and I couldn’t open my eyes, the sunlight caused excruciating pain. I couldn’t even unlock my phone to call my job and tell them I wasn’t coming in that day. Things started becoming blurry, I couldn’t tell if the photographs I had taken were in focus. My eyes started hurting all the time.
And if that wasn’t challenging enough, I watched my face change to the point where I didn’t even recognise myself. Slowly becoming disfigured, a term I hate. “You look different.” That’s something that I’ve heard from strangers and myself. As I watched my face swell, my eyelids retract and my eyes bulge. I couldn’t even look people in the eyes. I went from taking solo trips to Europe, sailing, skiing and sky diving to living in fear. During the midst of all of this, I felt like my insurance company didn’t care that I was headed down the path of permanent disability. They wouldn’t approve the only medication that exists to help me. It felt like they didn’t care that my life was being taken away from me and that everyday I was being taken further away from myself. During this battle, I felt like I had lost control of my own life, I felt like I had lost myself.
But, after much grieving, I decided I need to take action and put in more self-work. At that time I had come across a community of people living the same shared experiences. (TED Community Organization.) But it wasn’t until someone from that community told me that they fought hard for the life they created for themselves before being diagnosed, and that they decided they weren’t going to let a diagnosis take that life from them, that things changed. It really stuck with me and allowed me to view my situation differently.
For me, this is where hope began to come alive.
I can’t control what people say to me, I can’t control the circumstances of my condition, I can’t control the decisions of what I perceive to be greedy insurance companies about whether or not my condition is “medically necessary” to treat, and I can’t control people abandoning me when I get sick.
But I can control what I say to myself and the way that I see myself. I can grieve the loss of who I was and still be who I am. I can be fearful for my future, but not let that consume my present. I can seek out community. I can turn around self-abandonment, and so can you. Everyone’s journey and situation are different and I don’t take that lightly. But that’s what I did. It was difficult and it took time and hard work. And I’m asking you to join me in doing the same. If I can do it, you can too. Don’t stop fighting. Don’t let this disease, or any disease, steal from you who you are. I promise you, that you can come home to yourself. Remind yourself of who you truly are.
My life may look different and I am different, but I am still me. I’m a photographer. I go on solo trips and adventures. I go after my dreams and so can you.
