How My Thyroid Eye Disease Affected My Family

After writing several articles about how thyroid eye disease (TED) affected my life, I decided to delve deeper and talk about how TED affected my family. This meant asking questions and hearing the pain and confusion my husband and four adult children experienced.

Why is this the most triggering article to write? Their honest reflections seem to be pooling in my gut. I am hoping by putting it on paper, I can release it all to the past and feel the comfort of the present. If you go back and read my articles, you will see I had no problem sharing my own pain, fear, and frustration over this unmerciful disease yet hearing and sharing my family's pain is so hard!

Here's how thyroid eye disease affected each member of my family

It seems that what affected them the most is the length of time it took for a diagnosis and how that affected me. My symptoms were concerning enough in 2017 to push for answers. Two years later I was diagnosed with Graves' disease and thyroid eye disease. Being dismissed by so many doctors, I beat myself up for feeling so weak and looking so wide-eyed. Evidently, I am not a talented actress. In their comments, you will hear how wise and caring my family is.

But wait! I need to take a break before I quote them...ok, here we go.

My daughters' reactions

My daughter, Noel, referred to those undiagnosed years as follows: "For me, it made me feel sad and concerned that you had to go through so much sickness, discomfort, suffering, and feeling guilt and shame, not knowing you were dealing with an autoimmune disease and then having to deal with all of the side effects."

I found it interesting that Noel's mind immediately went to those two helpless years and not to the following years of treatment.

Then when I talked to my oldest daughter, Tiffany, I heard the anger she felt during those two years of my hopeless search. I actually admire her anger, and her, for so freely feeling it. I needed her anger when I felt so shot down. I hope some of you, who are struggling with your own anger and confusion as you deal with this disease can gather strength as you read her unapologetic words.

"From my point of view, it was challenging to watch you struggle to find a diagnosis and heartbreaking to listen to and observe you struggle with wondering if you were exaggerating or manufacturing your symptoms. You were faced with having to make the choice of sucking it up and moving through life as if you were okay, or sitting it out and having to justify how sick you were, without a diagnosis to back you up. I was pissed off that none of the professionals that you sought help from were able to put the pieces together and provide you with the correct course of action!"

Whew! This was one of those role-reversal moments. I hope my daughter's reaction fueled with anger, gives any of you struggling with self-doubt, permission to feel your pain and fight for yourself!

Interesting that I had never asked my family how my disease was affecting them. Probably because I was too busy trying to hide how it was affecting me. Yet, when I asked my youngest daughter, Megan, how she felt during that time, her answers were right on the tip of her tongue.

"Mom, I felt hopeless and helpless," she said. "I noticed a lot of cancellations on your part. I was concerned and worried and I feared maybe you were going to lose your eyesight or maybe even die. I just kept that fear to myself."

Her words reminded me of how important honest conversations about even the toughest life situations are. For those of you in the midst of the active phase of TED, can you talk honestly to your loved ones? I know how exhausting TED can be, but I am thinking an honest dialogue and simple education of the disease is needed. (She kept her fears to herself.)

Megan continued, "When I saw your eyes, red and bulging, I wanted to fix it. I tried to mask my feelings by using humor to lighten things up." As she said this, my mind went back to the time we met at a restaurant for lunch. We were sitting across from each other having a "FACE TO FACE" conversation. You all know how painful those face to face conversations can be when your eyes are so distorted. As I looked across the table at her big, gorgeous brown eyes, she was looking back at my bloodshot, bulging blue eyes. I remembered noticing that she kept averting her gaze downward and was making little jokes...masking it with humor. There is no hiding this disease so we might as well talk about it.

How my thyroid eye disease affected my son

During most of my journey through TED, my son, was out of state. He has the toughness of a soldier who has served seven active tours. I visited him and his wife and my grandchildren after most of my surgeries were done. He was simply honest about how he observed my eyes. I admire that. "One eye looks lazy," he commented. I explained what thyroid eye disease and Graves' disease is. Throughout the rest of my visit, he would quietly and kindly ask if I remembered to take my medication; his way of showing he cared. How amazingly proud I am of my son who has had to be so tough and yet remains so kind.

Healing and positivity

Beyond the pain and confusion and helplessness, my family felt, they shared more with me that was surprising and healing. Once Tiffany expressed her anger about my two-year search for a diagnosis, she gave me credit by saying, "If you weren't persistent, resourceful, educated, and financially secure as you are, you may never have received the proper diagnosis when you finally did." I am so relieved that she can walk away from this knowing she can believe what her body is telling her and be a strong advocate for herself, if and when, she faces some medical problems.

Noel also shared her positive observation by saying, "It has been very inspirational seeing you bravely go through infusions and surgeries, choosing to stay hopeful and positive and taking the opportunity to learn about your disease to help others through your articles and interviews, sharing your story." She continues, "You always make lemons into lemonade so this was absolutely no surprise. You're a vessel to give hope to others going through treatment."

I find solace in these lessons they have so wisely learned. They choose not to hang on to the negative and for that I am thankful.

My husband was also impacted

My husband has been my constant cheerleader throughout this journey. I can keep no secrets from him. I knew he was worried when he would search for my forever-missing sunglasses or offer me Tylenol when he noticed I was dealing with eye pain before I even did. He also insisted I needed a cold compress for my eyes. Ice-cold towels dripping wet always ruined my hair for the day. I eventually had to turn those down, but I so appreciated the need he felt to help me. I don't know if he tells me how pretty I am because he knows I need to hear it or because he really believes that. I choose the latter.

Where we are now in my TED journey

Well, I got through this difficult article.  But listen to this thought I have been dealing with. Even though I am beyond my surgeries and my thyroid eye disease remains inactive, I secretly worry about the slim chance that my disease may flare up again. After everything I have shared here, I can walk myself through this...I don't need to worry about this alone...I can talk to my doctor...share the statistics with my family... and go on enjoying the healthy side of TED together.

This journey we travel together is such a learning process. I would love to hear how you, my TED WARRIORS, share your struggle with your family.

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