Taking back control from disease
Posted: May 12, 2022 | Word Count: 514
Breaking up is never easy, but often it's necessary. For some, it might be ending a romantic relationship that's not working or a friendship that no longer serves you. For others, it could be regaining power from a debilitating health condition that takes a major physical and emotional toll on your life.
One of these health conditions is Thyroid Eye Disease (TED) — a rare autoimmune disease that causes symptoms including eye bulging, double vision and terrible eye pain. Up to 50% of people with Graves' disease — the most common form of hyperthyroidism — may develop TED, although TED can also occur among those with Hashimoto’s or hypothyroidism.
Living with any rare disease, including TED, is a very personal experience that can sometimes feel isolating and overwhelming. Many people with TED also report feeling less like themselves due to the impact of their symptoms on their everyday lives.
The emotional impact of a physical condition
In addition to the physical toll TED can take on one’s vision and appearance, the emotional toll can be just as difficult. When your vision is impacted, any type of movement may be dangerous — such as driving, walking or exercising, leaving many without their independence and unable to do the activities they once enjoyed. What's more, they may feel too self-conscious to socialize and opt to stay home more often, which can result in lost connections with friends and family.
When your relationship with someone or something takes you away from who you once were, it's time to reconsider your future.
"Breaking up" with TED
The first step in taking back control from TED is acknowledging the impact it has had on your life and that you deserve better. This campaign, which was initiated on Valentine’s Day — a day that traditionally has a high break-up rate — encourages those living with or affected by TED to write a “Dear TED” break-up letter. In this letter, you can write to TED directly about the negative effects of its symptoms and the actions you are taking to regain power, including getting the care you deserve.
Sharing your experience may help others feel less alone and empowered to break free from their own symptoms sooner.
To help you start, here are some letter-writing tips:
1. Describe when you or your loved one first met TED and how it made you feel.
2. Share the first signs you or your loved one noticed and how long it took to find out about TED.
3. Write about the impact TED has had on your life, including your relationships, work or social activities.
4. Tell TED the actions you are taking to regain your or your loved one’s power. This may include working with a TED Eye Specialist, staying vigilant about monitoring symptoms and connecting with support groups.
5. Make a promise to yourself to thrive or help your loved one thrive in spite of TED.
6. Share a piece of advice for others living with or caring for someone with TED.
To submit your Dear TED letter and learn more about TED, visit DearTEDLetters.com.