After almost 3 years, my thyroid eye disease (TED) specialist has informed me that I am in an "inactive" phase of this disease. There has been so much uncertainty and so many challenges. So why am I not throwing confetti around and dancing on tables?
Do not get me wrong, I am happy. I am REALLY happy. I am not struggling as much to do some of the simple things in life, like walking outside, watching television, driving the car, and working. I am not shying away from cameras, dinner gatherings with friends, etc. But truth be told, I am only cautiously optimistic. Anyone who knows me will tell you, I'm the one who sees the bright side, my glass is ALWAYS half full.
My thyroid eye disease symptoms paused my optimistic view
During the active phase of thyroid eye disease, many symptoms had me pausing that optimism. It's difficult to navigate the emotions surrounding each symptom. At first, I was confused about the various changes in my vision. I was having a hard time focusing on things at arm's length, then occasionally things closer or farther away. I could not find a rhyme or reason. I could not predict when these vision abnormalities would occur. I became sensitive to light. My eyes were constantly watering. I went to my regular optometrist, who referred me to an ophthalmologist, who referred me to a different ophthalmologist, and so the cycle of doctoring began.
There was puffiness around my eyes. For that I saw my general practitioner, as this may have been due to a recent change in medications. This led to another change in medication. Later, I was referred to an allergy specialist. Ultimately, there were no real answers for the puffiness and tearing. And again, there seemed to be no way to predict when or for how long I would need to endure. I was prescribed different medications to help with inflammation, and instructed to take them as needed. With all of this, I felt more confusion, and a bit of self-doubt, as I began to question my role in controlling the various symptoms. I thought maybe there was something I could do differently, if only I knew what.
Feelings of fear, and uncertainty
About a year into all of this, an MRI of my head was ordered, which yielded no findings, thankfully. However, the mere suggestion of that test scared me. Waiting for the results was difficult. I was really beginning to worry. What was wrong with me, and why couldn't anyone seem to find it? Even for the most optimistic person, all of this can affect your positivity.
Then one of my eyes slowly and only SOMETIMES seemed larger than the other. Back I went to the ophthalmologist, who immediately referred me to a thyroid eye disease specialist. Due to my doctor's urging, the specialist saw me that very same week! More scared feelings. I knew nothing about thyroid eye disease, adding more confusion, and uncertainty. But I did know that when a specialist agrees to see a new patient within a week of the referral, it cannot be good.
The specialist conducted many tests and we talked extensively about my symptoms and their progression. I was then diagnosed with thyroid eye disease. Now, I was NOT happy. In fact I was downright angry. I was feeling emotions so deeply negative and so unlike my usual character. I cried right there in front of that doctor. I cried most of the way home. All I could think of was my poor husband having to deal with this! He didn't sign up for this! (He has been an absolute angel and my strength through it all!)
Taking back some control and optimisim
I knew I needed to learn to accept it. In the weeks that followed, I read everything I could about thyroid eye disease. If I was going to have this, I needed to know what I was up against. I learned that my symptoms were on point with others who suffer from it. So, I picked myself up, and became determined, headstrong, and empowered. However, I was still feeling very much alone. My mother suggested I look for a community of support. Thankfully, I found ThyroidEyeDisease.net. Hello, optimism, my old friend! I have learned more from this community than I ever could have on my own, even with a library science degree!
Now, I'm less scared. I understand the symptoms and how they ebb and flow with the disease. I understand that it can be very unpredictable, and different for each individual. When my eyes started feeling and looking better on a regular basis, I knew I might be finally entering an "inactive" phase. At my follow-up appointment with the TED specialist, he confirmed that I was, indeed, in a calm phase, and didn not need to be seen for a year.
Now I feel conflicted. I feel relieved that some symptoms have subsided a bit, and my appearance is more "normal." However, I am finding that I don't trust this as truth. My vision isn't quite what it was. Will it ever be? I'm still very sensitive to light. Will that ever resolve itself? I don't like to drive. There's something about the movement in my peripheral as the car moves forward that causes double vision for me. So, I'm still not completely independent. Will I ever be? I went for a walk outside by myself the other day, but I wasn't relaxed. What if the double vision came now? Will I always need someone with me, just in case?
As much as I want to remain positive, be optimistic, and live life fully and independently, thyroid eye disease is making it difficult. I'm grateful for the pause in many of the symptoms and the diminished uncomfortableness in the ones that linger. For now, I will lean into that feeling of gratitude, and take it day by day.
Do you suffer a range of emotions surrounding the ups and downs of the symptoms of thyroid eye disease?
Have you taken our In America Survey yet?