How I Mentally Handled Having Thyroid Eye Disease

When I was diagnosed with thyroid eye disease (TED), I went into survival mode. This caused me to put my head into the sand and put all of my focus into maintaining how I reacted to this disease and it's ever-changing symptom patterns I experienced. The toll TED took on my mental health was astronomical.

I could usually gauge how I was doing mentally by how messy my room got. During this time, I truly did not care about my external space and therefore, my room was extremely messy. Clean clothes stayed in the laundry basket while dirty clothes lined every inch of the floor. Notes with single thoughts and opened books piled up on my desk. I wrote a poem about how the mess inside my room reflected how messy everything was inside my head without mentioning what it was I was going through.

A pattern of avoidance

It was as though my whole life leading up to TED had prepped me for going through this experience. Avoidance and disassociation had lingered throughout my entire existence like an imaginary friend. I was a scared child from the moment I was born, three months premature. I convinced myself when I was six that I didn’t have a stutter. I didn’t hear or feel my stutter in my body until I was twenty. As a teenager, I didn’t feel the physical consequences of living at a higher altitude. Different medications in my teens and early twenties influenced my mental health in ways I only realize in hindsight.

Facing reality through my notebook

A few months into having TED, it was suggested by a family friend to write about what I was feeling. That maybe writing about it, something I was good at, could help me cope with having this problem. I sighed, feeling my heart sink. I couldn’t write about this disease while I was going through the thick of it. Because writing about it made it real.

If it existed in my notebook then it was part of my reality. I was doing everything I could to write in my notebook as though I was living a life without TED. My notebook didn’t need to know about my daily struggles, or so that was my thinking at the time. I have since learned my notebook is the exact place my feelings should live. It’s a safe place to reflect my reality, it doesn’t have to be a mirror I constantly avoid because I am fearful of the reflection.

Navigating mental management in survival mode

I lived in survival mode. I was in a constant state of disassociation. It was as though my conscious mind saw what was happening, became overwhelmed, then opted out. Leaving my subconscious mind to go into a disassociated state. I wasn’t present in my body. I couldn’t feel the overwhelming feelings. I couldn’t feel the swelling around my eyes. The uncomfortable awareness surrounding them quickly became normal and then numb. I had a baseline of humming anxiety at all times. Only in retrospect do I recognize the mild depression that swirled around in my mental state like a shy ghost. I felt so numb, so distant from my body.

I pushed thoughts of frustration and misery to the side like they were the clean clothes in my hamper that could be dealt with at a later point. I couldn’t think about how this disease was impacting my life. Every time my double vision became too much, I quickly accepted the moment by closing my eyes. I couldn’t let the frustrating feelings stay when this was a daily occurrence for years. I just had to get through it. Like I said, I lived with my head in the sand. Until I couldn’t anymore.

Finding my way to self-care and healing

I tried developing a meditation practice. I spent way too much time on the internet to avoid dealing with all of it. But sitting for even 90 seconds proved to be difficult. My thoughts turned into a panic spiral if I couldn’t distract myself from my reality. Even allowing the present to be a possibility was off-limits. It took a lot of trial and error to develop a consistent self-care routine. The seeds of the routine I have today were planted in the midst of desperation for distraction.

The week after I was officially diagnosed with TED, I saw a story post on Instagram of someone with the tattoo THIS TOO SHALL PASS. The tattoo was on their arm and was faced for the person to read. I took a screenshot of the photo. I liked the message and promised myself that if I were to ever get more tattoos, this would be one I would get. Seven years after I first went through all of my TED stuff, I got this too shall pass tattooed on my arm facing me. A forever reminder that I can get through anything.