How TED Taught Me Patience

I have always been a pretty patient person. I am not usually someone who sighs to myself in a long line or gets antsy when things are taking too long. Having thyroid eye disease (TED) really tested my patience while at the same time teaching me how important it is to be patient with my own body. Especially when my body is dealing with a disease that is out of my control.

Recurring symptoms testing my patience with thyroid eye disease

On the first day when I had very minimal TED symptoms, I felt as though I was turning a corner in this disease. I was still extremely uncomfortable but both of my eyes were moving in sync again. I had some double vision but I could still read my book at the end of the day. My eyes were tired but I did not feel forced to go to bed before 10 AM because my eyes were done for the day. I thought I was managing this disease steadily after years of feeling pretty unbalanced.

This turned into weeks of one step forward, and three steps back. I would have one good day where my eyes were not bothering me that much, followed by three bad days of back to back to back migraines and irritated eyes. Then I would have two good days, one bad day, three good ones, and two bad ones.

The push and pull of thinking I was doing well, followed by the letdown of not-good days really tested my patience. All I wanted to do was get through this and yet I was feeling whiplash by getting my hopes up on the good days.

Not making as much progress as I thought

I would see my TED doctor every 3-6 months to monitor how the disease was doing and where I was in the process. This one visit, the person who comes in before the doctor was doing my eye exam. Checking vision changes, eye pressure, and all of the things that have to be recorded. I was feeling pretty confident on this particular day. I was telling them how I felt my symptoms were improving and how I was possibly seeing the light for the first time in this very long dark tunnel that is this disease. Unfortunately, my eyes were not aligning with what I thought I was experiencing.

The doctor came in, looked at all the numbers that were recorded moments ago, and said, "this train is moving slowly, very slowly." I tried to argue and say, but what about the improvement in how I’m feeling? He agreed that I was improving but it would just take time to have clearer results and I had to be patient. Frustrated after the appointment, I went to my car and cried a little bit. How could I have been so wrong about something I thought was going faster than I realized?

The process of healing

I did not wake up one day and suddenly everything with my TED had miraculously vanished into thin air. The days feel long, like what I was experiencing was never going to end. Healing is a process that requires patience, more patience than one might think. Through this disease, I learned how to be patient with the process, especially when it comes to something I cannot control with my own body.

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