A woman looks at a pamphlet for a new diagnosis. There is a large hand is snapping in front of her.

Tips For Someone Getting Diagnosed Part 2

Last updated: January 2023

One thing I have learned is that Graves' disease and thyroid eye disease (TED) are like this - Sometimes I would think things are getting better just for them to get worse. It always felt as if I was taking one step forward and then two steps backward. One minute I would think things are getting better and the medication was working, the next I was told it was not. One minute I would think my thyroid levels are fine, and then they would be too high, or too low. It was frustrating. Months and months would pass of me seeing doctors about my eyes where they would tell me it’s getting better and I just have to kind of wait it out. For years, I never felt like I was making progress. I am sure, according to the doctors, I was, but I was not seeing the results I wanted.

Welcome to part two of “Tips for Someone Who is Just Getting Diagnosed.” In my previous article, I discussed some tips for someone who is just getting diagnosed with Graves' disease and TED. I think this tip might be the most important tip: "Patience is key."

Having patience with thyroid eye disease

I realized that patience when it comes to these diseases, is something that I needed to have, but did not. Being an impatient person, of course, I wouldn’t have patience when it comes to this! Looking back at where I am now though, I really wish I had more patience. Nothing happens overnight. Nothing changes with the snap of a finger. I think if I had had more patience back then, I would have been way better off. I put a lot of unnecessary pressure on myself. I always thought, “What’s wrong with me?” Or “What am I doing wrong.” I wasn’t seeing the progress that I wanted, at the pace that I wanted.

When you are not seeing the results you want, especially after listening to doctors, it can make you want to give up. It can also make you question what is wrong with you. That is what was going through my mind a lot of the time. By the way, there is nothing wrong with you and patience is hard to have. Being patient is hard. Patience is something that maybe some people will never have. With thyroid disease and TED, since they both are such roller coaster rides, having patience is something that can really help you in the long run.

When I find myself being impatient

I did not have patience when I was first diagnosed but do I have it now? I think my answer is sort of. For someone who lacked patience for the majority of her life, it’s hard to all of a sudden snap your fingers and have it. It’s one of those things where if I find myself being impatient, I check myself. I remind myself to be patient and to take a deep breath. It’s a process, for sure, but I know it has helped me and will continue to help me.

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