How TED Impacted My Stress Levels

As I look back on the 3 years of being in the active phase of thyroid eye disease (TED), I realize that it had not only impacted my eyes but it also added a gripping level of stress in everything I did - from waking up in the morning to going to bed at night.

It was stressful knowing that everything I did required me to take my eyes into consideration.

At the beginning of my thyroid eye disease journey

During the very beginning stage of TED, I no longer simply woke up in the mornings and opened my eyes. They felt like they were permanently closed and pain would shoot through them as I tried to open them. Instinctively, I had to use my fingers to very slowly open them. This way I could control the pain.

This was the initial layer of stress that came with this disease. It was as if my eyes greeted me in the morning with, "No matter what you do today, we are here to make it difficult."

This caused me to hop on the doctor merry-go-round. Without exaggerating, I saw 10 different doctors, and many of them repeatedly, as my symptoms worsened. I received so many unhelpful diagnoses such as; "you must have allergies," "You are getting older, as we age, our eyes get drier," "there is nothing wrong with your eyes, it is your makeup," and even, "I have no idea what is going on with your eyes!"

I was told all of this as I stared back at them with my swollen, bloodshot and distorted eyes. I am sure there was a look of desperation on my face too. I was working around so many doctor appointments, only to realize that many doctors seemed to imply that I was attention seeking! That was stressful!

Then there was one doctor who looked at the droop in my left eye and left side of my face and suspected that I may have had a mild stroke. Waiting for the all clear sign from my MRI was stressful!

Eventually, after a 2 year search and well into the active stage of TED, I was diagnosed.

I soon learned that a diagnosis did not mean relief from the symptoms. I had to live with the demise of my eyes until they went into the inactive phase. For me that was another year.

This continued to add another layer of stress to my daily life.

The impact of TED on my daily stress

Simply looking at my distorted face in the mirror triggered a deluge of negative thoughts...UGH! "How weird I look...I look like a monster!" I resolved not to look in the mirror but then there were those accidental glimpses. And so the stress would follow me through my days.

Every plan I had for the day had to be well thought out. If I was going to the grocery store I had to assess if my vision was stable enough. If I was struggling with double vision that day, I had to accept that I could not drive. The discipline to be honest about such a drastic life change was stressful.

Other decisions I made seemed to only add to the stress I felt. I wanted to keep up with family and friends so I tried not to cancel functions. Yet sometimes it felt like it would have been easier to cancel, especially when my eyes were bulging and my eyelids were retracted.

That wide eyed stare is not only a scary look but it is also extremely uncomfortable. To ease the angst others felt by looking at me, I would assure them that I was not staring at them and give them a quick understanding of TED. By addressing that issue, I felt we could converse more comfortably.

But as brave as I tried to be and as much as we smiled and laughed and enjoyed ourselves, I still felt the physical and emotional discomfort and pain. The stress went everywhere with me like a toxic friend. As we know, during the active phase of TED, our eye symptoms continually change. 

At one point the eye bulge and retracted eyelid was far worse in the left eye making it ultra sensitive to light, air, and visually focussing on anything. I chose to soothe it with a special eye ointment and then keep an eye patch over it. Just trying to figure out what worked for me to get through the days was stressful.

Of course life goes on and normal things happen like finding myself having company over for dinner. Looking at everyone around the table with one patched eye and the other unpatched, bulging eye, took a lot of focus. I tried to ignore the stress it was causing me.

The thing about thyroid eye disease is it runs its damaging course no matter what is going on in your life. The demise of your eyes is right out in front and if you want to live your life normally, it takes a lot of energy and determination. For me, the 3 year battle took a toll. Knowing that you have to fight this battle for as long as it takes is stressful.  

Reaching the inactive phase: Recognizing how far I have come

I celebrated once in the inactive phase. The stress I felt going through the eye surgeries to repair the damage left in the path of this disease, was offset by the renewed hope I felt for normal looking eyes.

I am beyond all that now and it has recently occurred to me that my days are no longer all about my eyes. I do not have to consider them with every move I make. It is only now as I take a deep breath that I can truly admit how challenging this disease has been and I give myself credit for living beyond the stress.