What Did I Do Wrong? Thoughts on Graves’ Disease and Thyroid Eye Disease

I have received a lot of messages from individuals with Graves’ disease and thyroid eye disease (TED) over the years. One question that often comes up in conversation is “What did I do wrong?”

I used to ask myself this question a lot. Why me? What did I do that could possibly trigger such awful diseases? What if I had never done XYZ? Is there anything I could have done differently?

Reflecting and questioning

I very clearly remember the day I realized there was something wrong. I heard through the grapevine that there was a misunderstanding between a good friend and me, and I immediately felt a rush of stress. I was upset, reached out to them via text, did not hear back, and when I went to bed my heart was racing...and it did not stop. Could Graves’ disease have been triggered that abruptly? Or did I just notice it then? Did something else trigger it earlier, and symptoms had been slowly building for months?

Or what about the doctor who had just previously diagnosed me with an underactive thyroid (yes, you read that right - I was on medication to increase thyroid production when I started experiencing Graves’ disease symptoms). Did that low dosage of medication push me over the edge?

And why was I one of the unlucky few who developed a severe case of thyroid eye disease? Was it because it took me several months of navigating this doctor’s poor advice along with insurance hoops to get on the correct medication for my overactive thyroid?

Who knows.

Did I do something wrong to get Graves' and TED?

I understand that we are all just trying to make sense of the world. People have told me, “I know it is my fault...I should have done XYZ differently.” I have also heard people without thyroid issues say they are extra careful about their lifestyle choices in order to avoid thyroid problems, not realizing what the flip side implied - I was not careful? Like I did something wrong and gave myself two autoimmune conditions? My career as a fitness instructor and focus on nourishing my body was not good enough compared to whatever they were doing? How on earth could I have seen this coming? Did they know something doctors did not?

The truth is - that scientists do not know exactly what causes Graves’ disease and thyroid eye disease. Yes, we know of some risk factors (for TED - age, sex, smoking, high cholesterol, radioactive iodine therapy, genetics, other autoimmune conditions). However, many of those risk factors are not choices, and even considering the ones that are - not everyone gets TED. There is so much that is unknown. Just think of how few treatment options there currently are - we have so much more to learn about these diseases. Maybe in a few decades, we will have more answers but until then ... ^1,2

The takeaway

In my case, the why or how no longer matters. I have Graves’ disease and thyroid eye disease. They are lifelong conditions that may or may not flare up again in the future. They are responsible for the worst and saddest moments of my life -

And it is not my fault.

It is not worth speculating. Sometimes we can do everything right and bad things just happen. And things do not always happen for a reason.

I would like to end here with a few words just in case you need to hear them, too -

It’s not your fault either.

Be kind to yourself, friends.