Cruising with TED

The summer after I was diagnosed with thyroid eye disease (TED), I went on vacation with my family. This wasn’t any old family vacation, it was a vacation with my dad’s side of the family on a cruise. For eight days in the Caribbean. I had known about the cruise long before I was diagnosed with TED but having eye problems made the idea of going on a cruise less appealing to me. I was excited to see and be around my family, which I don’t see that often, for a week. Everything else I was dreading.

Coping with being uncomfortable

I was uncomfortable all the time in my daily life by how bad my eye swelling had become. Not to mention the double vision, light sensitivity, and depth perception issues, along with all the other minimal symptoms that felt like moving through life in another person’s body. Going somewhere I didn’t know, and navigating all of those issues on the ocean was going to be a challenge for me. Along with it being a challenge trying to explain this to my family.

So I didn’t. I consciously chose to be alone a lot of the time. I distracted myself from how difficult everything felt by staying in the shade. I read books, journaled, and spent way too much time on the Internet trying to cope with how uncomfortable I was when I should have been having the time of my life.

Experiencing TED symptoms on the cruise

The most annoying symptom I experienced on the cruise was light sensitivity. Sunlight, water light, every bright light I saw was difficult on my eyes. I sought out shade quite often in chairs that were underneath umbrellas or huge “egg chairs” that were located on a deck that had some sort of park in the middle. It was quiet. I heard the chaos above me with screaming kids and yelling parents but down there I was free to drink my Starbucks and read my book.

My depth perception was a pain. I didn’t drink at all on the cruise. I’m not a big drinker to begin with and my depth perception made me incredibly clumsy, especially on a moving boat. One night when we were out at sea, I went to a club with some family members. Being the sober person in a room filled with drinking people wasn’t fun. So I left early. As I was walking out, I missed a stair and fell flat on my face. Someone asked me if I was okay, I nodded, gave a thumbs-up, and rushed out of there as quickly as I could.

My double vision was incredibly finicky during my time at sea. There were days when I woke up with double vision and all I could do was sit and wait. I would go to my cabin which had no windows and lay in the dark because that was the only thing I could do.

Clouded by guilt

Don’t get me wrong, there were fun moments. Like learning how to salsa dance with my cousin and his wife, watching my dad laugh at a comedy show. I swam in the ocean for ten minutes then lounged in a cabana for the rest of the afternoon. My family and I played mini-golf at night on the front of the ship. I walked around Puerto Rico with my grandfather and uncle. We saw the musical Hairspray. I loved being able to see my family and catch up on what had been going on in our lives. But all of that was clouded with feelings of guilt for not having a great time because I wasn’t feeling like myself.

Reflecting back

Looking back at photos of the cruise, I can feel how uncomfortable I was. My eyes have changed a lot since that time but I see photos and I’m taken back to how I felt. A feeling I didn’t know I was experiencing until I was no longer feeling it. I was just trying to get through it and not run into things. I wish I had enjoyed the cruise the way my family members did. Though, luckily the fun moments are the ones that have remained in my memory while everything else has faded with time.