The Roller Coaster That is Thyroid Eye Disease

Having thyroid eye disease (TED) is like being on Space Mountain at Disneyland. There are twists and turns you don’t see coming. You are waiting to see the light at the end of the tunnel while being thrown around in ways you cannot predict. Except this is a ride you did not choose. You just found yourself on it one day and are trying everything possible to get off.

Pace yourself

The light at the end of the tunnel will come. The active phase of this disease is typically 2-3 years. When symptoms and pain are present, time moves slowly. Each day feels like 3 in 1. You can experience many different feelings and symptoms over the course of a few hours.

There were many moments where things can get better. You have a good symptom day, experiencing less discomfort. Only to beat yourself up when the light sensitivity and double vision come back harder the following week. It’s the difficult part of healing. One step forward, three steps back. Pace yourself, it’s part of the healing process.

The beast

The hardest trials in life are the ones we do not choose. The ones we stumble into that change the trajectory of the direction we thought we were heading in. That’s the beast of thyroid eye disease. It causes you to question and consider many elements of your life you would not have otherwise done.

In these lowest moments of this disease, all you may want to do is run away. Stop feeling the pain. Stop feeling the discomfort. Stop feeling all the changes you have no control over. The weight of this disease looms large over every aspect of your life. Your friends and family may not understand what you are experiencing. All you can do is befriend the beast and do your very best to breathe through the moments that can be so overwhelming.

Patience is key

When it comes to light sensitivity, it is nearly impossible to step outside without going temporarily blind by the daylight. Irritated eyes can ruin your entire morning as you continue to grab tissues to wipe the tears away. Double vision can make reading a book super frustrating. These are moments.

Moments are temporary. Feelings are fleeting. It is difficult to remind yourself when in it but the more it happens, the more you can predict the outcome and the more you can have patience for yourself in a difficult season.

It's unfair: Riding the roller coaster that is TED

You did not choose to experience this disease. It just happened to you and now you must reckon with it. There is so much unfairness in it. How come your life is flipped upside down and split into two while everyone else gets to continue to have normal-looking eyes? It sucks. There’s no denying that.

However, it can be unfair and you can also learn not to dwell on the roller coaster you found yourself on. There’s light at the end of the tunnel. Hold onto the things that bring you joy. Focus on what you can control. Remember a chapter in one’s life is not the entire story. You will get through this. This too shall pass.

How do you navigate the TED roller coaster?