Spoon Theory and Thyroid Eye Disease

I first learned about spoon theory a few years ago. It’s a metaphor related to chronic illness that discusses the amount of energy someone has available each day. Everyone starts the day with a certain amount of spoons (or energy). Some people start with fewer spoons - it may depend on the person, and it may vary from day to day. Various daily activities require a different amount of spoons, and individuals with chronic illnesses often require additional spoons for a given task. If someone doesn’t plan accordingly and conserve their spoons (or if a demanding situation suddenly arises), they may run out of their daily spoons too soon.

I recall a time when I had more spoons. I have three autoimmune conditions, and back when I was navigating the first one (celiac disease) alone, things felt pretty great. Currently, the only treatment for this condition is an incredibly strict gluten-free diet. This disease definitely came with a lot of challenges, and it’s necessary for me to always be aware of food safety, but I was fortunate to find a groove pretty quickly. New concerns would eventually come up, and extra spoons were often needed to navigate social situations and traveling. Otherwise, the disease itself was well-managed, and I felt good.

Needing more spoons because of thyroid eye disease

Then came Graves’ disease and thyroid eye disease (TED). Much of my attention (and many of my spoons) went to navigating concerning symptoms. Normal daily activities that used to require one spoon suddenly demanded more.

For example, let’s say I previously used a single spoon to apply my makeup in the morning. Thanks to thyroid eye disease, makeup became much more challenging - my eyes were constantly watering, and I often ended up needing to either fix my makeup throughout the day or re-do it completely. This of course took more spoons.

Some tasks required a lot more emotional energy - looking in the mirror, for example. On one hand, it seems like a fairly basic task, but thyroid eye disease changed a lot about my appearance. Seeing my reflection often brought about a flurry of emotions - loss, sadness, frustration, and fear. It was easy to get lost in these feelings, and they often affected me for the rest of the day. So I either avoided mirrors, or more spoons were suddenly reallotted from other tasks to navigate those emotions.

Additional spoons were needed to navigate the COVID-19 pandemic and the stress of trying to receive medical treatment during a worldwide health crisis - if I caught the virus shortly before surgery, my treatment would be significantly delayed. I reasoned that if I just focused on getting through surgeries safely, I’d eventually be in a better, easier place, and maybe I could eventually use those spoons for things I enjoy.

Where I am now

Yet it’s ongoing. I’m still recovering from a recent surgery - I’m tired (the body is amazing in its’ ability to recover, but wow does that take a lot of energy), and I’m anxious. Will my eyes look a little more like they did before? And the fear - my worst fear is that after everything I’ve been through my symptoms may someday resume. Additionally, I’m working on practicing acceptance - accepting and loving the person I now see in the mirror along with accepting the unfairness of this disease and how much it has taken from me. Doing this work for my mental health is challenging, but I recognize its importance. The anxiety, fear, and emotional work - they all use up more spoons.

Currently, all of my autoimmune conditions are fairly well managed - celiac disease is well controlled through diet, my thyroid levels are stable, and I’m in the inactive phase of thyroid eye disease. My body no longer feels like it’s fighting itself, but ever since thyroid eye disease came in to my life I feel like I’ve had fewer spoons to start each day with. I’m just so tired. I’ll of course speak with my doctor about this fatigue, but I think that perhaps navigating multiple chronic illnesses just becomes a lot, no matter how good the test results are.

Doing our best with the spoons we have

So if you’re like me and find yourself wondering why you’re tired - first perhaps check in with a medical professional, but also know that you’ve probably been going through a lot. And that takes a toll. We’re all doing our best with the spoons we have.

Feeling like you need more spoons throughout the course of the day? Share your story with the community, and connect with others who may be feeling the same way. You have support here.