How TED Affected My Quality of Life

Do you sometimes, or often, feel your quality of life has been affected by thyroid eye disease (TED)? Are your days "all about your eyes"? To be transparent, I will admit that the pain, shame, and frustration of dealing with changes to my appearance and vision took a toll on my emotional health.

As an advocate for patients considering Tepezza, I have talked to many TED peers who confide in me the same. Though the purpose of our conversations is to share my Tepezza experience as they strive to make their decision about going forward with treatment, during the conversation, my peers are emotional about how the active phase of TED has affected their quality of life. As they share their stories, I reflect back on how I felt before being on 'the other side of TED.'

Vision changes and pain affecting quality of life

There are those physical changes. Whether it is trouble moving your eyes, pain, or vision changes, TED can make it harder to do certain daily tasks. One of my peers detailed how they could no longer drive and how that made them dependent on others. This is certainly an unexpected life change that they admitted affected their self-worth. As they shared this with me, I recalled my struggle with driving during the active phase. I recalled being so frustrated after making multiple wrong turns to simple destinations in the evenings. Perhaps it was not a good idea to drive at night. But, I admit, I personally brushed my limitations under that dirty rug until my double vision was at its worst. For my safety and that of others, I temporarily hung up the car keys.

Another despondent peer explained how they had to take a medical leave from a job they loved but involved hours of computer work. Because of vision changes, and painful and fatigued eyes, they could not keep up with it. This created a financial burden, causing them to experience anxiety and depression. How do normally active and independent people suddenly accept the loss of jobs and call friends and family for rides to the ever-mounting doctor appointments?

Changes to social situations

If all of these physical changes aren't enough, let us address the impact TED has on our social life and relationships. I understood when my peers confided in me that they felt the need to withdraw from social events. They explained that it was difficult and even exhausting to have face-to-face conversations. With upcoming social events, for them, came anxiety and ruminating thoughts... Would their scary, wide-eyed look make others feel uncomfortable? What if they needed to close their eyes for awhile? Does the puffiness and redness make them look old and tired? This led to cancellations, isolation and depression.

I personally tried to keep up with family and friends but I would preempt some events by explaining to them that I was not intentionally staring at them but my eyelids are retracted from my thyroid eye disease. This made it more comfortable for them as well as me.

But I did have to give up something very special to me. I am the author of a children's book, Millie Mae Speaks Up to a Bully Today. My greatest joy was giving book presentations to young children in elementary schools. During these presentations, I brought the story alive with an animated reading using eye contact and facial expressions. Following the reading, we would have conversations about what the children had learned and how they would speak up for themselves if being bullied. I had never realized before how much we use our eyes in normal conversations and then in more theatrical situations. I tried, but my eyelids were retracted and I just could not make it work. It seemed my eyes and facial expressions were limited. I felt defeated and sad to give up such a passion of mine.

What has helped me regain a better quality of life with thyroid eye disease

I share all of this so that all of my TED warriors know that it is not uncommon to feel depression, anxiety, and even a loss of self-worth, as we journey through this unforgiving disease. You are not alone. Our quality of life takes a hit. The active phase can take its time (mine was three years). It is not like we have had the flu for a week or two. We go through a lot of physical changes accompanied by discomfort and pain. This impacts our work life, our social life, and our emotional well-being.

What helped me get through this period was talking honestly to my doctor about how I was feeling. After all, no one knows (not even my doctor) what I am going through better than me. I decided not to downplay my symptoms. For example; I would not say, "my eye are sensitive," but rather, "Every bit of light hurts my eyes!" I was specific and descriptive. I also told my doctor how I was being impacted by TED by letting him know the things I could no longer do.

Although I wrote all my questions down before my doctor appointments I always felt I had more questions, so I did my homework by reading books on TED. One such book was Thyroid EYE Disease, written by Elaine A. Moore. Elaine Moore is a Medical Technologist, with more than 30 years of experience working in hospital laboratories. By being proactive about my care and understanding of TED, I felt I was doing everything I could for my health. It gave me some control when my eyes were out of control.  

As you are struggling with TED and all of the changes to your eyes, face, and your quality of life, know that the active phase will burn itself out. In the meantime, reach out to your doctors and get the help you deserve. Arm yourself with all the information you can learn about this challenging disease. Knowledge is power. I gradually got my quality of life back and I wish all my TED warriors the same.

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