Travelling a long road with Graves’ disease and thyroid eye disease (TED): a care partner’s perspective
Frank Marshall is the husband of Christine Gustafson, who lives with Graves’ disease and thyroid eye disease (TED). He has been Christine’s companion on her long journey, from the start of her mysterious symptoms to her dual diagnosis, from her challenging surgeries to the present day. From his perspective as a care partner, he is sharing his insights into living with compromised vision
Frank and Christine’s 35 years of marriage have been a “really great experience”, Frank says. “Our time together has somewhat revolved around doing active things,” he adds. “We’ve had a lot of fun going for long bike rides, and long walks, and Christine loves to swim. She’s always been a very active person—more than me—but she inspired me to be more active.”
Since 2009, however, they have both had to contend with the challenges brought by Graves’ disease and thyroid eye disease (TED). In the autumn of that year, Christine started noticing symptoms that made her think something was wrong. “She was losing weight and her eyes were getting very red and irritated,” Frank explains. “They were painful, and chronically irritated and dry.”
Christine’s other worrying symptoms included shaking, anxiety, and a racing heartbeat (her resting heartrate doubled to 120 beats per minute). As Frank says, “They were certainly challenging symptoms. When your vision is compromised, it’s a tough thing to face.”
The couple were completely in the dark as to the cause of these symptoms. “We had to start a journey of trying to find out, through visits to the doctor and doing our own research.”
It was puzzling and worrisome for them both to wonder how somebody who kept in such good shape, working out every day, could suddenly be facing these things. “I was concerned, not knowing if this was going to be easy to remedy, or how bad it would get if it got worse. We just got really busy trying to find out what was going on and the best way to treat it.”
Later in 2009, Christine was diagnosed with Graves’ disease (an autoimmune condition affecting the thyroid gland) and TED; her endocrinologist said her thyroid levels were the highest she’d ever seen. When treatment was started for Graves’ disease, Christine thought it would help her eyes, but she hadn’t realised that TED is a separate autoimmune condition. It wasn’t until 2012 (three years later) that the endocrinologist mentioned she should see an eye specialist.
As time went on, Christine’s appearance changed radically—her eyes started to protrude, frightening some of the children who looked at her, making social interactions fraught. She was horrified by this and felt really isolated.
Aside from that immense psychological challenge, the practical difficulty was choosing which treatment path to take. “There seem to be different schools of thought on treatment for Graves’ disease and TED,” Frank says. “We tried to be very thoughtful about that.” He and Christine considered treatment options carefully, and this included finding and talking to other people affected by TED, so they could learn from their experiences. “Having to decide which way to go was a big decision. We discovered there could be surgeries that would help her eyes, and we felt that was our best path.”
The surgical path was a long one with seven separate operations over ten years. “She had to be very brave—anybody might be frightened of surgery, but especially when somebody’s working on your eyes.”
The operations on her eyes certainly brought benefit to Christine, Frank says, but a lot of worry went before them, and one of the last surgeries, while very helpful, left her with double and chaotic vision. “What she saw was scrambled. I was afraid for her as she struggled to continue doing the things she loved.” Six months after the decompression surgery, Christine saw a strabismus specialist, and he was able to restore her normal vision, a miraculous outcome. Knowing the possible benefits and risks of any treatment is vital, Frank believes. “You have to be very thoughtful about what you’re willing to face.”
“If we could share anything with anybody who’s going through something similar, we would both say to do your research: really study before you make any quick moves because there can be drawbacks to any kind of treatment and there are always new things coming up.”
Frank says his role through all of this has been “just to be there as her husband and close associate… to have so many conversations, talking things through to make the right decisions—what doctor do we connect with, for example”. He acknowledges the excellent care from “some very good doctors and surgeons”, albeit sometimes at great distance from their home in California—and some of the expenses have come from their own pockets rather than their insurance.
On their long journey searching for a diagnosis and then surgical treatment, Christine has shown enormous bravery, but Frank has played his part, too. He’d never been a caregiver before, and it was something he had to learn to do. “I really did have to learn things and become stronger and braver myself.”
“I think the whole experience has made Christine and me both stronger, maybe more compassionate, more willing to listen to people when they’re going through something. Because you realise how important really listening to what they’re going through might be to them and how much it can help.”
Christine has described living with TED as like living in a cave, one she has been gradually able to emerge from with the support of doctors, others affected by TED, and Frank.
“Frank is the hero in the story of my journey with Graves’ / TED. His kindness, compassion and willingness to help me navigate the long and winding road has made the miracle of my recovery possible.”– Christine
Frank lays great emphasis on the importance of a support network. “Our initial support network was different doctors, but that is not enough. When you are going through something alone, it’s important to connect with other people who have been down that same road who can share what they have been through—and even share things to stay away from. I highly recommend that.”
Equally, Frank does not doubt that connecting with other caregivers would have been beneficial to him, too. “When you’re going through something alone, it can seem a lot bigger to deal with.”
The couple’s journey has been a slow and testing one, but Frank feels that he and Christine can now safely look at in it their rearview mirror. “It’s been just such a long road, and she has faced up to everything. She’s doing quite well now and seems to have got past the worst of the condition, so she’s very fortunate.”
As well as hoping that Christine would never have to go through anything like this again, Frank hopes that there will be progress in education around TED and more treatment options for it.
“For others I would just hope that there’s more and better help—and better answers.
I would just wish for anybody to have a better road of it.”
This article has been made possible with support from Viridian Therapeutics. Viridian had no editorial or copyright control over this content. Views are solely those of the contributors.