I'm Still Here for You: Sharing My Hope

It's been a challenging journey since 2017, when Graves' disease and thyroid eye disease (TED) joined forces and attacked me at the same time. Reflecting on many of those days of active TED, I realize that I could not envision a day without struggles and frustration. I felt the same darkness and despair that I know many of you feel as this disease rages on. It seemed like every day was a new day with a new challenge. Yet, I knew I couldn't let the full impact of negativity take over.

The relief that is remission

The bad joke is that crying only makes our eye symptoms worse. Fast forward to now, as I sit in front of my computer with almost no eye symptoms! Remission is such a relief! I realize that sometimes, even now, I take my healthy eyes and painless days for granted. But isn't that usually how it goes with our health? Often, we don't know how wonderful our good health is until we lose it. 

When I think more deeply about the years of my TED struggle and now being in remission, I want to pay it forward. I've been where you are; I know your pain and frustration and how hard you work to manage your days and your nights around your constantly changing eye symptoms.

But I asked myself, if I'm not in the same pool of pain that you're in, how do I help you? I can commiserate about the past, but we all know that commiserating is only beneficial to a point.

Sharing my hope for TED remission

I think I can help by giving you a healthy dose of hope. I want you to believe that remission is possible for you. There will come a day when your eyes feel better and look better. You may even encounter times when someone notices how pretty your eyes are, and I hope they will make sure to tell you.

When will you experience pain-free days of normal-looking eyes? I wish I had a timetable, but everyone's situation is different. In my experience, thyroid eye disease does burn itself out, but in its own time. 

Everyone's timeline is different

From my first symptoms to remission, it was about 6 years for me, but don't use this as your timeline. As you hold that hope for remission, I can give you a few ideas about dealing with your symptoms in the active phase. Looking back, my way of handling this period was to research everything I could find on this disease and understand it. With this knowledge, I could proactively talk to my TED specialist about an action plan, even if it was a plan to alleviate symptoms that we knew wouldn't go away.

Partnering with my doctor

For example, plugging some tear ducts could induce more tears in the eyes and relieve that desert-dry feeling. Another procedure we tried was stitching the right eye shut for 6 weeks to promote relaxation of the eyelid retraction.

My understanding of thyroid eye disease enabled me to ask for the help I needed. I made sure I understood my symptoms (sometimes, we get so used to them that we don't verbalize all of them to our doctors). I knew that the more I understood what was going on with my eyes, the better I could explain it to my doctor, and the better he could help me.

My wish for those in active TED

I wanted as much help and relief as I could get! That is what I wish for you, too. Get all the help you need during the active phase. When your symptoms get too crazy to live around, ask for help. Once my eyes had settled enough, I opted for the surgeries to treat the eyelid retraction, removal of the excess skin above the eyes because of the long-term swelling, a second surgery for the stubborn eyelid retraction, and several in-office procedures.

I can now look in the mirror in the morning with a confident wink, knowing that I will not see any new scary eye changes. There were long periods of TED time when I did not believe remission was a real expectation. But it is, and it will be real for you, too.

I hope that you all reach that point sooner than you would ever permit yourself to hope for.

The joy of remission

Remission is joyful! It is forgetting to worry about your eyes. It is also:

• Putting on make-up to enhance your eyes instead of hiding them.
• Reading actual books instead of listening to them on audio.
• Knowing you can participate in outdoor activities while only wearing sunglasses.
• Shopping in stores without considering the white lights.
• Having a face-to-face conversation with confidence instead of trying to apologize for your eyes.

Remission is what I want you to know; it is a real achievable goal. I want it for you as much as I love it for me.