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Thyroid Eye Disease and Unsolicited Advice

Somehow it feels like the moment I mention that I have autoimmune conditions, suddenly everyone is an expert, even if they have never heard of the diseases. And I know that I am certainly not alone in being annoyed by this phenomenon.

A friend (who has different conditions) and I have an ongoing chuckle about the number of times the idea of turmeric has been swung at us since it started trending in recent years. “Forget these pesky doctor appointments and surgeries - turmeric is the answer for everything under the sun!” Sometimes we just have to laugh.

But amidst the laughter, I do find unsolicited advice to be at best annoying, and at worst harmful to the community. Here are some phrases that I have been told over the years.

Unsolicited advice about my thyroid eye disease

"You don’t need to wear sunglasses or all that makeup. We like you the way you are!"

Most people making these comments knew that I was struggling with thyroid eye disease (TED). Perhaps what they did not fully understand is that during the worst years of TED I used both sunglasses and strategic makeup techniques to help me feel more comfortable and more like myself. They were coping tools that helped me mask my symptoms and (especially when taking photos) would hopefully create a less triggering situation.

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I did not care what these people thought - my coping techniques were for my benefit, not theirs. Even so, I have heard many people judge makeup and fashion choices when a medical condition is not a factor, and in my opinion all of these types of comments are very unnecessary.

"Breathing exercises cure Graves’ and TED."

This is just plain false. There is no scientific cure for these autoimmune conditions. When I first saw this comment on one of my emotional videos about TED, it felt like a slap in the face. You mean I could have avoided years of pain, mental health struggles, and costly surgeries just by breathing differently? Cool.

Also, suggesting a solid cure when one scientifically does not exist could encourage someone to go off of their very necessary medication and cause lasting harm.

"You should try yoga."

Oh I do, I have been a yoga teacher for 15 years! Certainly, it is important to care for oneself physically and mentally, but I do not need anyone to tell me how to do that and yoga certainly is not a treatment for my conditions. I wrote about this in more depth in my article "Yoga Doesn’t Cure My Autoimmune Diseases."

"Don’t do surgery. I know someone who had a terrible experience."

It is one thing to ask if it is okay to share a personal experience. It is quite another to instruct someone to forgo planned medical treatment and invoke fear. Every disease and individual case is different, depending on personal factors. Surgeons and their approaches can differ, as well. If I want advice I will ask for it. Otherwise, my doctor and I have it covered.

Taking a different approach

Now, I have been on the other side of this conversation. Someone tells me that they have a condition that I have personal experience with, and I believe that I have insight that could be helpful. But I am careful not to immediately impose my ideas on them.

I will often take the route of “I hate unsolicited advice and don’t want to impose. I have personal experience with this condition. If you’d like to chat sometime, I’d be happy to tell you about some things that helped me, but it’s totally up to you.”

What unsolicited advice about thyroid eye disease have you received that was unhelpful?

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