When Time Was My Only Friend
Last updated: December 2022
When I was going to doctor’s appointments for thyroid eye disease (TED) from 2018 to 2021, the options for combating the symptoms I was experiencing were limited. The drugs available today were in clinical trials back then and were not available to the average patient.
Thyroid eye disease treatment: Options I was given
I was put on steroids five months after being diagnosed when the swelling around my eyes became too uncomfortable and that caused more harm than good to my eyes and body. My doctor suggested that if I wanted to, I could do radiation to help with the swelling but that seemed too drastic for the situation I was in.
At one point, the option of Botox for my upper eyelids was brought up to help bring them down so my light sensitivity could be less overwhelming and so I could stop wearing sunglasses all the time. But that option wasn’t worth trying from my point of view. Plus, I absolutely hate needles so that was an easy decision.
My best TED treatment option: Time
All I had was time. I had to trust that my body would heal. This was difficult because this disease fought hard and strong, wreaking havoc on my eyes and life. How could I trust my body while this was happening? How was this the only option? As it turned out, it was the only option I had.
Being physically uncomfortable and not being able to make that discomfort go away is one of the most helpless feelings a person can feel. Day in and day out, my reality was defined by the discomfort I was feeling. This discomfort caused me to feel helpless, depressed at times, and really alone. Sure I had my family and friends but they couldn’t understand how I was feeling.
Coping with waiting
All the Facebook groups I joined were filled with people talking about their experiences and how difficult it was. Photos of bulging irritated eyes made me very uncomfortable to see. People talked about their progress with surgery and all the different stages of this disease. Honestly, it was too overwhelming and sad to scroll through. I left those groups after a few days.
Journaling has been a big part of my twenties. I’ve found it’s a way to help me process my feelings in a healthy way. However, I couldn’t write about my thyroid eye disease while I was going through it. I just couldn’t.
I wrote about everything else going on with me, everything to distract me from what I was experiencing. But I couldn’t go near this topic. And if I did write about it, it was vague and short. I couldn’t write about it because writing about it would make it real and somehow I was still hoping this would be a bad dream I would eventually wake up from.
Trusting time worked out in my favor in the end. Very slowly, the symptoms I was experiencing faded away one by one. I learned how to be patient with myself and my body. The unexpected detours in life that take a long time to come back from are the ones that will teach you things you wouldn’t otherwise know.
What in your life has TED impacted? (Select all that apply)