Questions I Had About TED After I Was Diagnosed (Part 2)

After the initial shock of my thyroid eye disease (TED) diagnosis wore off, I still had a lot of questions. These questions had to deal more with the journey TED would take me on than the physical logistics of the disease itself. I was asking myself these questions over the course of the first year of having this disease. These are the answers I wish I could have given myself back then, that I’m fortunate to know now.

Answers I wish I could have given myself then about my thyroid eye disease journey:

Will this be painful?

The pain is relative depending on the moment. The swelling around my eyes will make me feel very uncomfortable most of the time. But eventually, my body will get used to the feeling and it will become normal. It will become normal to the point where I become numb to it. It’s only when I look back at photos years later, once the swelling no longer squeezes around my eyes, will I realize how painful it actually was when I was experiencing it.

How will I cope with this?

In my experience, TED is very unpredictable. It will take at least six months after being diagnosed with TED for the overwhelming of it all to settle down. Once that happens, I will begin to find what helps me best is noticing patterns. In the ups and downs of this disease, there are some small consistencies that I will learn to rely on in moments of disarray.

Whenever my eyes become extremely irritated and tears start rolling down my face and I can no longer see, I will stop what I am doing and breathe. I will grab a tissue and try to stop the tears before they fall down even more. I will learn that frustration will only drag the moment out for longer than it needs to. Being patient with my body and breathing is what I can control. If I am able to, I will lie down with an eye pillow over my eyes.

Light is not my friend during this time. Light causes sharp pain due to my eyelids being pushed back. Instead of getting frustrated by this pain I have no control over, I create a uniform. I wear a hat and sunglasses every time I leave the house. Sometimes, I will even wear sunglasses inside my house if my eyes become irritated for long enough. I will become so used to wearing this uniform that it will take me months after my symptoms have calmed down for me to realize I no longer need to be wearing them.

Why does this feel like it will go on forever?

Time moves very slowly when this disease is active and overwhelming. I am constantly feeling on edge about what my unpredictable eyes will feel or do next. I will live with this feeling for longer than I’d like. It’s really only when the pandemic hits a year and a half into my TED journey that time will take on a new meaning and my worries over my eyes will take a back seat. When I’m hyper-focused on it, it feels like forever. When I’m not hyper-focused on them is when I allow my eyes to heal.

Will I need surgery for my eyes-lids and swelling?

Every time I see my TED doctor, I get a different answer. On one visit, he will say we should wait to do surgery until my eyes calm down a bit. I will see you in six months. On the next follow-up visit, he says it will be a while until we know for sure but you may or may not need surgery. I will see you in six months. His inconsistent answers give me hope that I will not need surgery.

Do you have a thyroid eye disease (TED) story? Do you have some of the answers now, that you were looking for at the beginning of your TED journey? Do you still have questions? Click the button below to share your experience with the community!