How to Be Your Own Best Advocate

Thyroid eye disease (TED) can be a confusing, lonely condition. But it does not have to be. Advocating for yourself can help when navigating a diagnosis, managing symptoms, and finding the best treatment options. What’s more, being your own best advocate can greatly improve your quality of life.1,2

For many, the road to an accurate TED diagnosis is a long and complicated one. Signs are often downplayed or ignored, symptoms may be mistaken for another condition, or a person does not know which specialist to turn to.2

6 ways to practice self-advocacy

Here are 6 helpful ways people with thyroid eye disease can practice self-advocacy.

1. Do your research and connect with the right specialist

Early detection and early management are important factors in reducing the side effects of TED. If left untreated, they can lead to serious eye damage and vision loss. The earlier you can get diagnosed and treated, the better the long-term outcomes for managing the disease. And finding the right specialist is key.3

Because TED is complex, it is not as widely understood as other conditions. But there are experts who specialize in treating people with TED, such as neuro-ophthalmologists and oculoplastic surgeons. These TED experts can be an important source of information and can match you with the right treatment strategies that work best for your case.2

2. Consider a second opinion

TED symptoms often overlap with other conditions, such as chronic dry eye and allergies. For this reason, TED is often misdiagnosed, especially in the early stages of the disease when symptoms are not as severe.2

If you are unsure about a doctor’s diagnosis or are not getting the help you need, get a second opinion. It is your right to take charge of your health and get the support you need.

3. Track your symptoms of thyroid eye disease

Keeping track of your symptoms can be very helpful as you and your doctor monitor your TED progression. Take detailed notes and document your symptoms by taking photos. Bring these notes and photos with you to your appointments with your doctor.1

TED symptoms can change over time. Having a record of your symptoms over weeks, months, and years can help your healthcare team assess how severe your TED is, whether treatment is working, or whether it is time to try a new therapy.1

4. Be honest with your doctor

Your doctor is there to help you, so do not downplay your symptoms. They need to understand how much TED is impacting your life.1

If you can no longer perform normal daily tasks like reading a computer screen or driving a car, tell them so they can understand the severity of your condition.1

5. Be an active participant in your own healthcare

Part of self-advocacy for thyroid eye disease is actively participating during your check-ups and doctor’s appointments. This means taking notes and asking plenty of questions so there is no confusion around your condition, such as:1

  • How will my TED be treated?
  • How often should I schedule appointments?
  • What changes should I be aware of when tracking my symptoms?

Understanding TED will empower you to continue to get the support you need and what next steps you can prepare for.

6. Reach out for support

TED can be a lonely disease. But you are not alone in this. It can be very helpful to seek support from people in your life – especially other people with TED.1,2

With any chronic health condition, it is important to feel seen and understood. Share your experience with those around you. Community support groups can help connect you with others around the world who are living with TED.

Being able to relate to others who are going through the same thing can be extremely validating and reassuring. Talk with your healthcare team about TED support groups in your local community. You can also find a strong support network here at thyroideyedisease.net.

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