Annie Larsson, 40, is no stranger to chronic conditions. She was diagnosed with type 1 diabetes at a young age and had it “completely managed” for years. Then, right before the Covid pandemic began, she was diagnosed with Graves’ disease, a condition that can make a person’s thyroid overactive.
A thyroid removal surgery later, all she had to worry about was taking her thyroid hormone replacement medication every day — a to-do she was accustomed to because of her diabetes. But then her eyes started changing.
She got “terrible bags” under her eyes, and started feeling pressure around them. She looked tired all of the time. But she reasoned her symptoms had more to do with her responsibilities than her health. “I had a one-and-a-half-year-old baby, we were about nine months into the pandemic, my stress was high,” she said.
It was only when Larsson’s 9-year-old niece — unburdened by the conventions of politeness that kept adults from saying anything — mentioned it that she realized her eye issue was getting noticed by others, too.
From there, Larsson’s condition kept evolving until she finally figured out what was going on. STAT spoke to her over Zoom about chronic conditions, parenthood and partnership under strain, and more.
This interview has been edited for clarity and brevity.
When did things start to really worsen?
There was a tipping point. It was like my eyes were starting to swell shut. And you have this layer, this film, over your eyeball itself that was starting to swell. I’m really proactive about my health and I often WebMD myself into a corner. I had read about thyroid eye disease and that there is some chance that you can develop it after having Graves’ disease if you have your thyroid removed. I went to my endocrinologist and she sent me to a specialist, and sure enough, she took measurements and I was already having bulging of the eyes. She could see just by looking at me that I was already in the very active stages of the disease.
How did it feel to get the Graves’ diagnosis?
Less of a blow than the diagnosis of thyroid eye disease later on. I had early Graves’ disease — the treatment was really straightforward. It was a year later when I thought that everything had cooled down. Then to have changes in my face start to happen… The plan was not as straightforward as, “Take a pill and it’s resolved.” I was still considering having a second child, so some treatment options were not available to me. And the active phase could be the next two years or it could be the next 20 years, and your eyes could remain like they are, or they could come bulging out of your face and you could get double vision and have to wear prism glasses, and those may not work. It felt so up in the air, and that was really scary. And also to have your appearance dramatically change overnight is a huge blow to the ego and something I was not prepared for.
It seems like you really value a clear plan of action and being organized in that way. Have you always been like that? Where do you think that comes from?
I would be lying if I said diabetes didn’t have a huge part of it. I was diagnosed in 1990, when I was 7. The technology to treat it wasn’t available then. So it was a very regimented schedule of eating and insulin injections. That just kind of translated into every aspect of my life.
How did you deal with the feelings of dissociation from your physical appearance, which can be very daunting?
I was 38 at the time, and I have always looked pretty young. And it aged me overnight. It was hard to look in the mirror sometimes and see a person you’ve never seen. And I am not exaggerating when I say that; it really changed my appearance a lot and, in my opinion, in a totally negative way.
I started wearing sunglasses when I was out. It’s hard to find a photo of me without sunglasses on because I didn’t want it memorialized. And also, one of the physical symptoms that hit me very hard was light sensitivity, so I was wearing sunglasses all the time indoors as well.
Were you also grappling with your postpartum appearance while dealing with the physical changes brought on by thyroid eye disease?
I was well enough into my postpartum journey that I had gotten my body back or whatever. But it had a major impact on how I enjoyed my family life and things that I could do with my daughter. There was a period of time where I was wearing those ice pack face masks almost all the time when I was at home, because the pain was just so intense. And it terrified my daughter. It was hard to navigate that. I’d have sessions in my bedroom where I’d lay down and I’d wear a cooling mask for a while because she’d want me to take it off if I was in her presence.
It just takes a toll on your ability to participate in your life when you’re in some pain all the time. She was one-and-a-half when I was diagnosed, and now she’s 4. So these critical years of her development and wanting to cherish this time and make these memories are a little clouded by a lot of memories of being in bed with eye masks on. In that way, it had a huge impact on my relationship with motherhood.
How did your illness impact your relationship with your husband?
I am lucky in that I have an extremely supportive partner who would go to the mats to get me the medical care I need. And he has really stepped up a lot in helping with parenting over the course of the last several years and taking our daughter out of the house when I just need rest. I know it’s been hard for him.
He didn’t sign up for me to completely look like a different person overnight. I don’t think he would ever speak candidly to me about how that impacted our relationship or his attraction to me. We haven’t really had that discussion, and it’s kind of a moot point right now. But I think for both of us, there is always that concern that it will come back. This is not a disease that’s over. I am actively living with this.
Can you describe what the pain felt like?
I had very bad dry-eye. It just feels like sandpaper on your eyes. And then any time I looked into the periphery of my vision — up, down, to the sides, or crossed my eyes (not that you do that very often, but…) — that created this intense strain, almost a sensation like when you twist your arm and you can’t twist it any further. And a lot of tension headaches around my face, in my forehead.
I’m very emotive when I speak and I gesticulate a lot and my face moves around a lot, and all of the up and down and movement of the muscles in your face really impacts the muscles around your eyes. So ultimately, one of the treatments I tried was Botox.
Did you start adjusting how expressive you were, whether intentionally or not?
Gosh. I haven’t even thought about that. I imagine I did. I probably was speaking more like this or that, I didn’t move my face around that much. I did consistently maintain the Botox schedule, so that helps. I’m sure that it had an impact on how outgoing I am and drawing attention to myself.
Do you have any words of wisdom or consolation or understanding for people who might be going through a similar experience?
This is the short straw they’ve drawn and it sucks and it’s not fun. And I am right there with them in the thick of those emotions. I think the worst thing you can do is try to put on a brave face and say, well, there are people suffering much worse in this world. Give yourself some grace and some space to grieve — what you looked like before, how easy things might have been before. I have found that talking about my experience is really healing. Reading about other people’s experiences is really healing for me. It’s a very rare disease so it feels very isolating. But I would hope that someone reading this might find some comfort in knowing that they’re not going through this by themselves, that there are treatment options available.
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STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.