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Coping With the Emotional Impact of Thyroid Eye Disease

If you have Thyroid Eye Disease (TED), you know it involves more than swollen eyes or double vision. It is an autoimmune condition associated with Graves’ disease that can change how you look. Studies say that around 40% of patients with Graves’ disease experience TED, where its active phase lasts from 6 months to 2 years approx.

Doctors often focus on medications and treatments for the physical side. But that leaves the invisible battle raging inside. The emotional toll of thyroid eye disease is real. It can impact your self-esteem, and leave you feeling angry, frustrated, or even depressed.

This blog is here to help. We’ll discuss the feelings that thyroid eye disease can bring up. Learn to face challenges and find support to feel like yourself again.

The Emotional Impact of Appearance Changes

A study of 714 people with moderate to serious thyroid eye disease showed a significant impact on their quality of life and mental health. 42% of patients experience anxiety and depression, and 66% suffer from high impact on their daily lives.

When you have thyroid eye disease (TED), those checkups with the doctor aren’t just about blurry vision or dry eyes. It’s also about facing the mirror and the changes you see there. Swollen eyelids, bulging eyes, and changes in eye alignment affect you deeply. These are hard for others to fully grasp.

It’s frustrating when people mean well but say things like “I barely notice it!” or “You still look great!” because they don’t exactly get it.

With TED, even small changes to your face can feel huge because you’re the one who has to live with them every single day. It’s okay to feel sad, angry, or scared – even if the changes seem subtle to others. Your feelings are valid.

How Thyroid Eye Disease Impacts the Way You See Yourself

When TED changes your appearance, it can chip away at your self-confidence. A study of 394 patients showed concerning trends. 44% felt anxious about their looks, 19% avoided going out, and 49% reported low confidence.

This impact goes deeper than physical changes. Thyroid eye disease can shake how you feel about yourself because it feels outside your control.

Maybe you try to ignore the changes, but they catch you when you least expect it. Your inner voice might say harsh things you’d never say to a friend. Or, it’s not about specific comments, but that constant fear of being judged.

Remember that thyroid eye disease won’t take away your intelligence, compassion, or any amazing part of you. Working with your doctor to explore treatment options can give you relief. For mild symptoms, doctors might recommend using cold compression or wearing sunglasses. For severe TED, doctors might recommend steroids and medications like Teprotumumab (Tepezza).

Tepezza is a drug for thyroid eye disease. It targets and blocks IGF-1R, a protein found on the surface of human cells, and a primary cause of TED pathophysiology. Tepezza prevents muscle and tissue expansion behind the eye and curbs the progression of thyroid eye disease. However, this drug is also linked to permanent hearing loss, hearing problems, and tinnitus.

If you’re considering Tepezza, it’s vital to know about the potential for hearing loss as a side effect. According to TorHoerman Law, up to 65% of patients have experienced hearing problems when using this medicine.

This added risk might trigger more anxiety, which made people file a Tepezza lawsuit alleging the manufacturer provided insufficient warnings about Tepezza’s risk of hearing loss. Around 8,334 lawsuits have been filed as of March 2024, highlighting the growing concern about the potential harmful side effects of this drug.

Strategies for Coping and Reclaiming Your Power

You can’t control TED, but you can control how you respond to it. Here are some strategies that can help you reclaim your power, one step at a time:

1: Start With Kindness

Start practicing more understanding and less inner criticism. Small acts of self-care can fix the problem and offer yourself the same kindness you’d offer someone you love.

2: Find Your Outlets

Carve out time for things that nourish your spirit and offer a distraction from TED. Hobbies, creative projects, even those  ‘guilty pleasure’ shows, start practicing them. Even gentle exercise (with your doctor’s okay) can help manage stress and boost your mood.

3: Set Boundaries for Well-Being

You are allowed to say “no” to things that drain your energy. Set boundaries by limiting time spent researching thyroid eye disease online. Take mental breaks when feeling overwhelmed.

4: Refocus on Resilience

TED can feel all-consuming, but fixating on what you can’t change only adds stress.  Start noticing any small things you do have control over – your morning routine, choosing a joyful song, texting a supportive friend.  Focus on those choices, not what feels out of your hands.

FAQs

Can Stress Worsen Thyroid Eye Disease?

Absolutely, stress can significantly worsen thyroid eye disease (TED). Stress releases hormones that harm the immune system, causing more inflammation.

What Are the Long-Term Effects of Thyroid Eye Disease?

Thyroid eye disease (TED) can cause double vision (diplopia) and changes in eye appearance like bulging or retracted eyelids. In rare instances, TED may lead to vision loss.

Can People With Thyroid Eye Disease Close Their Eyes?

Most people with thyroid eye disease (TED) can close their eyes. Severe forms of the disease may cause eyelid retraction or proptosis, making it difficult to close the eyelids fully.

What Should Be Avoided With Thyroid Eye Disease?

The most important thing to avoid with thyroid eye disease (TED) is smoking. Smoking worsens TED symptoms, makes the disease harder to treat, and increases your risk of developing it in the first place.

Finding Support: You Are Not Alone

When you’re dealing with the emotional side of Thyroid Eye Disease, it’s easy to feel isolated. But the truth is, the emotional struggles of TED aren’t “all in your head.” They’re a normal response to a challenging, unpredictable illness.

That’s why finding the right support can be life-changing. The American Thyroid Association is one of the organizations supporting thyroid diseases. Such organizations offer a space where you don’t have to explain the basics. You can share, vent, and ask the questions you might feel awkward bringing up with loved ones.

While some days will still be difficult, it does get easier. As you develop coping mechanisms, seek support, and stay informed, you build incredible strength. You will find ways to manage both the physical and emotional challenges that thyroid eye disease brings.

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