Caring for Someone With Thyroid Eye Disease (TED)?
Get Helpful Tips and Support
There are a lot of ways you can help someone with Thyroid Eye Disease
You’re not alone. Many others have had to learn along the way, too. The tips below reflect the collected wisdom of Thyroid Eye Disease (TED) caregivers like you.
Watch Debby describe how she has embraced her role as a TED caregiver
Debby LTYE Transcript
Debby: We take walks every day, hand in hand, as we did that day, and when we got home, our life changed forever. Just like that I became a caregiver. I didn't know how to be one. Everything was happening at once. The next days, weeks, and months, I got a crash course. I gobbled up as much information about Graves’ as I could. Then I learned about Thyroid Eye Disease or Graves' Eye Disease, as it's sometimes called. The role of the caregiver suddenly dropped into my lap. It can take a toll on me. Sometimes I feel tired and helpless. Sometimes I feel angry and inadequate. Once I heard the song “Candle In The Wind” playing, I felt like a candle in a hurricane, but I can reset. Just like that birthday candle that comes back, no matter how many times it gets blown out. It's not about going back to the way things were. It's about rising up and embracing a new role, putting humor and laughter and love into my toolbox. So how do I practically help my husband with his TED using love? The word Agape, a-g-a-p-e, is defined as the highest form of love. A love that persists no matter what the circumstances. This word fits so nicely as an acronym for some simple steps and helping my loved one with TED. A, awareness of subtle changes in the eyes from day to day. G: give reminders. How did you do with your eye exercises today? Did you use eye drops? Do you have sunglasses on, etc.? A: ask him how he's feeling on a regular basis. P: point out the hazards in the sidewalks, especially stairs with patterns can be very confusing and dangerous. E: embrace my role as a caregiver and get creative on how to make life not only work, but exciting going forward. And I don't forget to take time for myself. Today, we still take our walks hand-in-hand and talk about this scary, terrible, wonderful, bumpy life and how we face it together head-on. Same walk different journey.
“It’s about putting humor, laughter, and love into my toolbox.” — Debby, TED caregiver
Helping friends and family with Thyroid Eye Disease
- Learn as much as you can about your friend or family member’s condition and how to care for it
- Become an advocate for your friend or family member. Go to appointments, take notes, and always ask questions
- Trust your instincts. You know your friend/family member best. Don’t ignore what doctors and specialists tell you, but listen to your gut too
- Encourage your loved one’s independence. Caregiving does not mean doing everything for them
- Be open to technologies and strategies that allow your family member to remain as independent as possible
- Know your limits. Be realistic about how much of your time and yourself you can give
- Set clear limits and communicate those limits to doctors, family members, and other people involved
Remember, you need to take care of yourself too
As a caregiver for someone with TED, you may be so focused on taking care of them that you forget to take care of yourself. Before you know it, the stress of caregiving can burn you out. It can even make you sick and unable to provide care. Fortunately, there are some simple tips caregivers can use to take care of themselves.
- Avoid burn out. Get the support you need or you’ll quickly burn out, which can make it harder for you to care for both yourself and your loved one. There are times you may feel you need emotional or psychological support––and that’s normal. You can find support at your church, temple, another place of worship, or with a therapist, social worker, or counselor
- Don’t do it alone. Even if you’re the primary family caregiver, you can’t do everything on your own. Get help from friends, siblings, and other family members, as well as from healthcare professionals
- Set aside time for yourself. Even if it’s just an hour or two, take some time for yourself. Remember, taking care of yourself is not a luxury, it is an absolute necessity for caregivers
- Stay healthy. Eat right and get plenty of exercise and sleep
- Join a caregiver support group. Sharing your feelings and experiences with others who are in the same situation can help you manage stress, locate helpful resources, and reduce feelings of frustration and isolation
Listen To Your Eyes Facebook Community (sponsored by Horizon Therapeutics)
The Listen to Your Eyes Facebook page is a community resource for people living with or caring for someone with TED. This page offers resources, tips, support, and more. You’re not alone in caring for someone with TED. Listen to Your Eyes is a place where you can come to learn about TED and be inspired by others who are navigating their own TED journeys as patients and caregivers.
Graves’ Disease & Thyroid Foundation
The Graves’ Disease & Thyroid Foundation is a helpful resource for caregivers. They provide ongoing conferences geared towards those who have been impacted by Graves’ disease and TED.
HelpGuide.org is a resource to help people overcome the challenges of being a caregiver by providing education on making informed decisions and tips for staying positive.
All About Vision
All About Vision provides a range of helpful information for caregivers, including tools on how to help someone who is visually impaired.
Practicing good self-care is important for caregivers. The Cleveland Clinic provides information on caregiver burnout and how to avoid it.
VisionAware provides helpful tips on making day-to-day life easier for people with low vision. They also provide a directory of local services and a supportive online community.
Family Caregiver Alliance
The Family Caregiver Alliance has many tools to help support caregivers, including the Caregiver Connect service. Caregiver Connect allows caregivers to connect to resources and to each other.