Rare Disease
11.11.2026
Thyroid Eye Disease (TED) isn't always easy to live with, but talking about the experience can help patients see their best way forward. In this animated conversation, two women who are friends and fellow TED patients talk about their emotional and physical challenges, from double vision to changes in appearance to the social isolation that can follow.
Their exchange also reveals what a serious impact TED can have on day-to-day life, potentially affecting everything from driving to socializing. Especially if you have Graves' disease or hyperthyroidism, watch to learn more and recognize early TED symptoms. And finally, discover why speaking with healthcare providers about your eye health can make a difference.
TED is a rare disease, affecting between 90 and 250 in 100,000 Canadians.1 It disproportionately affects those with Graves’ disease or hyperthyroidism, with approximately 25 to 40 per cent of people with Graves’ disease developing TED.2
Although everyone has a different experience with TED, there are common symptoms and outcomes. Thyroid Eye Disease is caused by the body's autoimmune response from the inflammation around and behind the orbital bone (eye socket). Fat and muscle tissue can swell up, causing unpleasant symptoms including pain around and behind the eyes, abnormalities in eye movements, bulging eyes (known as “proptosis”) and double vision (“diplopia”).3 Other common symptoms include a gritty or dry feeling in the eyes, 4headaches, and light sensitivity.5
These physical signs and symptoms can have a big impact on day-to-day lives, and may severely impact the patient’s quality of life. For example, driving, reading and working can all be affected.6
Perhaps the most poignant fact about TED is the emotional toll it can take. As the video portrays, TED has been associated with increased rates of anxiety and depression, decreased confidence, and increased social isolation, largely due to changes in appearance caused by the disease.7
Adding to the problem, Canadian patients may notice that they haven’t always had access to the same treatments as people with TED in certain other countries8,9.
Despite these challenges, “In Their Eyes” ultimately delivers a message of hope. The experienced patient shares how speaking with healthcare providers, including specialists, can make a critical difference.
For those experiencing symptoms like redness or inflammation around the eyes, bulging, gritty sensations, or vision problems including double vision or light sensitivity, the most important step is: Talk to your doctor. Early recognition and intervention are recommended for those living with TED.10
While the journey with Thyroid Eye Disease may be difficult, no one needs to walk it alone. Through medical support, understanding, and connection with others who share similar experiences, patients can find their way forward to better eye health and quality of life.
Two women with Thyroid Eye Disease (TED) discuss challenges including double vision and social isolation. Sharing experiences helps them see a path forward.
Hey
Hi
Great to hear from you
I’m so glad I reached you
I guess we haven't talked since the Women's Health event. How are you?
I’m OK. But I wanted to let you know it's official: I have TED.
Oh, I'm sorry. Yeah, finding out you have Thyroid Eye Disease is hard to take in.
That's good to know. I thought TED was quite rare.
It is rare, but about 25 to 40% of people with Graves' disease develop TED. For me – I was already being treated for Graves’ and my endocrinologist caught the eye symptoms early. But you don't have Graves’, right?
Right.
Oh okay, it was your oculoplastic surgeon who noticed the changes?
Exactly.
Right, well TED can show up differently for different people. I think that's why it took a while for me to piece everything together.
So, what could I be in for?
When I got diagnosed, I won't sugar coat it. It wasn't easy. I was already dealing with thyroid issues from Graves’. So, an early symptom to look out for is the double vision. Also, your eyes can feel gritty. And they can look red and bulging.
It wasn't just uncomfortable… I was anxious about my appearance. I thought it looked awful. On top of that, my vision was blurry, like yours. I had a lot of trouble reading. Driving was out of the question. And I was becoming light sensitive.
But you know what the worst thing probably was? Like a lot of people with Thyroid Eye Disease, I was feeling really down because of how I looked and felt. It really affected my day-to-day. I stopped going out, avoided coffee with the other moms… I even started leaving my camera off in Zoom meetings because I felt so self-conscious. I'll be honest, it was a dark time.
But… things got better?
Yeah, things did improve – after I talked to my endocrinologist about what I was experiencing. We only have a few treatment options, but she helped me understand my options. She said my timing was great and reassured me there were steps we could take. Together, we came up with a plan – and the path forward became a lot clearer.
So definitely talk to your oculoplastic surgeon, and try and get a referral to an endocrinologist, too. The important thing is to get as much help as you can and don't give up hope, OK? You're not alone. I know it's cliché, but there can be light at the end of the tunnel.
Thyroid Eye Disease, or TED, is a rare illness affecting between 90 and 250 in 100,000 Canadians. But if you have Graves' disease or hyperthyroidism, there's an estimated 25 to 40% chance that you'll develop TED as well. If you experience any of the following around your eyes: redness or inflammation, bulging, a gritty feeling, vision problems, including double vision or light sensitivity, talk to your doctor.