The Support We Need
Last updated: February 2023
Is there a person in your life you lean on to help you navigate the ups and downs of thyroid eye disease? Do you rely heavily on one person or maybe, like me, many?
It cannot be easy for them. I often find myself trying to put myself in my loved ones' shoes. I wonder how they do it. They show me grace and comfort and support in a myriad of ways, only some of which can be put into words.
I am like anyone dealing with thyroid eye disease. I have good days and bad days, both as my symptoms go and also emotionally. At any given moment you will not know what I may be dealing with. To live with me, or to be close to me, you must learn that you may be on the receiving end of any number of emotional responses. These are not intentional. In fact, I work very hard to remain positive and light-hearted. But this disease is sneaky and can surprise you at every turn.
My support people, my friends, and my family have consistently proven their love for me regardless of my current mood. They listen without judgment. They seem to genuinely care about what I am going through. They ask follow-up questions, which helps me verbalize my feelings or symptoms. This helps me work through the current reality. They help me get creative in dealing with symptoms. Sometimes, if the mood is right, they will help me see the humorous side of it all.
Helping me through my thyroid eye disease journey
My husband is the real hero. He has become my other set of eyes. He is my chauffeur, walking buddy, narrator, and advocate. I do not feel comfortable driving. We have shared a vehicle for many years and he's used to having to work out the carpooling details. Now he almost exclusively does the driving. We have had to kick up the communications a notch in this area. But we're making it work. He takes me to my many doctors' visits and procedures and never once complained.
I have to force myself sometimes, but we are determined to walk outside together. We live in an area that experiences all of the seasons. Sunny days can make it difficult to see. Light sensitivity is a real deal with thyroid eye disease. My husband has become accustomed to me donning a bit of a costume when the sun shines. There may be an eye patch, under a pair of eyeglasses, under a pair of very dark sunglasses, all under a wide-brimmed hat! In the winter, when there is a fresh layer of snow, and the sun shining, it can be blinding. On days like this, I hold his hand, sometimes a bit tight so as not to lose my footing.
If we go to a new place, where the terrain is new to me. He tells me if there is something in my path. "Stick." "Step down." "Stay left." These light directions may even be uttered mid-sentence in our conversation. On our walks, he knows my gaze is usually downward. When there is something up in the sky that he knows I'd like to see, an eagle, or a beautiful blooming tree, he stops to allow me a beat to focus on it.
We happen to work in the same school district. I am aware that my husband has been known to explain my disease to others. This helps them understand why my office lights are dimmed, or why I wait to the side while the students pass in the hallways. He knows it saves them and me the potentially uncomfortable conversation. After meetings in my library space, he stays and helps me return the tables and chairs to their places. People may think he's just being a husband, but I know he's being a rock star thyroid eye disease support person.
To those giving us the support we need:
If you are reading this because you know and love someone who has thyroid eye disease, first, let me thank you on their behalf. We need you! But also, let me offer this advice. Please know that you are appreciated. Know that every question you ask lets us know you care. Every time you lend your hand to help stabilize us, we feel your love. When you call, not knowing which emotion you may be met with on the other end, we appreciate your emotional sacrifice. When you listen, sympathize, offer suggestions, or just sit quietly and let us vent, please know your intentions are felt deep within. When you let our tears fall on your shoulders, understand that many of them are for you. We know this disease is not ours alone and we could not deal with it if not for your help. We are eternally grateful.
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