As an eye health professional, you will likely be familiar with symptoms of many autoimmune eye conditions, but do you know what it feels like to live with visible eye symptoms?
Global Health Living Foundation (GHLF) Australia – a not-for-profit organisation founded in 2015 – has a mission to improve the quality of life for Australians with chronic illness. For this article, Rosemary Ainley asked members of the GHLF Australia community about their experiences of living with visible eye symptoms.
There are more than 100 autoimmune conditions, spanning all age groups and affecting around 10% of the population.1 Logically, that means around 10% of your patients could have one.
In some cases, autoimmune eye conditions are your patients’ primary condition, examples include uveitis, thyroid eye disease (TED), or Sjögren’s syndrome. In others, eye conditions are secondary to conditions such as Graves’ disease, lupus, or multiple sclerosis. Other autoimmune conditions that can lead to eye symptoms include:
- Ankylosing spondylitis,
- Juvenile idiopathic arthritis,
- Psoriasis,
- Giant cell arteritis, and
- Hashimoto’s disease.
Living with an autoimmune condition comes with a host of distressing symptoms. When symptoms also cause visible eye differences, patients often face embarrassment and stigma. While these symptoms can come and go, the impact they can have on your patients’ mental health can be lasting.
Some of their remarks made me want to… bury my head, to disappear and hide from the world.
Living with the Stigma
Stigma can be broadly grouped into three main forms. External stigma comes from the negative attitudes, beliefs, and practices directed towards us by others. Internal stigma happens as we gradually believe these attitudes, beliefs, and practices, and they start to shape our self-esteem. Structural stigma refers to policies and practices that lead to unfair standards and treatment for people who live with inequities.
Your patients may encounter any or all of these at different points in their lives. Sometimes, it is the perception or anticipation of stigma that is enough to affect their daily actions.
As well as the stress of stigma from visible symptoms, people with autoimmune eye conditions can also face other mental health impacts such as anxiety, depression, and social isolation.
Not everyone with eye conditions will experience stigma or other emotional impacts, but we believe it is important for eye health professionals to be aware of the impacts on those that do.
Meet the Patients
Marian Lee developed Graves’ disease and TED following a thyroidectomy. TED causes inflammation and damage to the fatty tissues, connective tissues, muscles, and nerves around the eyes. Ms Lee said while TED didn’t significantly impact her vision, she experienced some blurriness, which gradually faded. However, the uneven appearance of her eyes has caused her a lot of stress.
Veronica Miller has experienced TED twice. It first appeared 20 years ago during pregnancy with the sudden bulging of her left eye and reappeared last year in both eyes. Her symptoms included grittiness, blurred and double vision, watery eyes, intolerance to glare, lid oedema, lid swelling, red eyes, and fluid-filled bubbles on the eye’s surface. She reported facing a lot of stigma about her appearance over the years.
Michelle Smith lives with lupus and Sjögren’s syndrome, a condition that attacks the glands that produce tears and saliva, leading to dry eyes, dry mouth, and other symptoms. Ms Smith said her eyes often appear red and bloodshot as if she has a hangover. When her eyes become too dry, her vision becomes blurry. She is also prone to eye infections, which cause a collection of mucus in the lower eyelid.
Prudencia Francis also lives with lupus and she initially experienced frequent bouts of iritis. Iritis refers to inflammation around the pupil and it is the most common form of uveitis. Her symptoms also included red and teary eyes, blurred vision, dark floating spots in her vision, headaches, and significant eye pain. Ms Francis recalls feeling demoralised after getting judgemental looks from those who suspected her of taking drugs or having a contagious infection.
At times, I felt like I was a set of eyeballs sitting in a specialist’s office. I wanted the specialist to see the whole person, and the life suspended due to illness
The Emotional Impact of a Diagnosis
Getting a diagnosis of a debilitating eye condition can be very confronting with more questions than answers. What does this mean? Will I go blind? How will I get around? Will I have to quit my job? Can it be treated?
Then comes the fear. For many, that includes fear of the unknown, especially for those who knew nothing about their condition beforehand.
Ms Lee said she felt quite alone and scared of the future after her TED diagnosis.
“I didn’t know anyone who had the same eye disease as me and certainly didn’t see any similar patients on the street. In the beginning, there was no one to turn to, because there was so little knowledge about TED, both by myself and from others around me. I hate the feeling of not knowing.”
Ms Miller echoed similar feelings after her first TED diagnosis. “The symptom that was most obvious to others was my bulging left eye. I had already experienced significant health challenges at 20 weeks’ gestation due to another issue, so was already feeling vulnerable. TED causes an intolerance to glare, so I wore sunglasses to cope with the glare, but was also thankful that I could hide my condition at the same time,” she said.
The Added Emotional Effects of Stigma
As a disability professional, Ms Miller was used to being around people who were stared at due to their appearance, but it was harder than she imagined being the one on the receiving end of the looks.
“Many people had never heard of TED. On one occasion, I was described as looking like Quasimodo by someone in a poor attempt at jest – I may have forgiven, but I haven’t forgotten that comment,” she said.
Several community members shared how the reactions of others made them feel self-conscious and embarrassed to be in public.
“Before I was diagnosed with Sjögren’s syndrome, I felt stigmatised by some health professionals who queried my personal hygiene, questioning why I repeatedly had to purchase antibiotic eye drops,” said Ms Smith.
“People are sometimes taken aback by the appearance of my eyes and ask me what is wrong with them. If I have an eye infection, people understandably want to keep their distance, which makes for awkward interactions.
“I try to avoid going out in public or to work when I have an eye infection, which is often, as it looks awful,” Ms Smith added.
Ms Lee described how difficult it was to live with a changed appearance.
“I didn’t like looking in the mirror, even walking past shop windows I avoided looking at myself as much as possible because I knew I would feel disappointed at the image staring back from the reflection.”
She went on to describe how reactions to her eyes’ appearance affected her at work. “I used to have a lot of online meetings… The flaws of the eye feature can be amplified on screen, which made me feel far less confident, especially when presenting in front of people from other companies who were likely wondering what was wrong with my appearance. The situation was even more challenging because I used to work in a male-dominated profession, where men could be incredibly insensitive.
“Sometimes, some of their remarks made me want to slap them, then bury my head to disappear and hide from the world,” Ms Lee continued.
Living with uveitis made Ms Francis’ eyes very sensitive to bright lights so she often used an umbrella for shade on sunny days. However, others would tease her about that. “I would hear people ask if I was OK but in a sarcastic manner. They would say things like, ‘You’re wasting the beautiful sunshine. In this country we use umbrellas when it rains and hats on sunny days’,” she said.
On one occasion, I was described as looking like Quasimodo by someone in a poor attempt at jest – I may have forgiven, but I haven’t forgotten
Coping With the Lifestyle Impacts of Stigma
Ms Lee said despite her colleagues’ thoughtless attitudes to her illness, her job required her to attend the office in person, which was difficult.
“I had to be strong and pretend as much as possible that everything was fine. Thankfully, I’m now in a new career with people around me who are more understanding and accepting. Their support has made me much more positive about my future,” she said. However, Ms Lee’s feeling of isolation and uncertainty persist as her TED remains unpredictable.
Before working from home became commonplace, Ms Smith would take personal leave from work when she got eye infections, to avoid awkward interactions in the workplace. “Now I can work from home when I have an eye infection, which makes it much easier to manage my condition and remain productive at work without making myself or others uncomfortable,” she said.
Ms Francis said iritis has affected her performance at work because it was difficult for her to read a screen for long periods. “I used to take sick leave more often than others,” she said. Her early bouts of iritis, along with other complications she has experienced as someone with lupus, led her into severe depression.
Having TED for the second time has been different for Ms Miller. “I am older and more seasoned, so less concerned about what others think or any stigma at this stage of my life,” she said.
“Last year, when I developed blisters on my eyeballs, my colleagues noticed and reacted with concern. They were supportive, as were my partner, family, and friends. I took the opportunity to educate and share knowledge in the hope that it might help others to understand.
“I’d like to think that people are more open-minded 20 years on, so I think there is generally more acceptance that the world is made up of all types of people, and people are interested to learn about an unfamiliar condition, especially when they’re talking with the person who has the condition,” Ms Miller said.
Health Professional Support
Three of the people who shared their stories had never had any of their clinicians specifically ask about their mental health or the stigma of their eye condition.
Ms Miller does not recall stigma being acknowledged or addressed by any of her clinicians. However, mental health support was recommended to her in 2024, and she accepted a referral to a psychologist to help her cope with the changes she was managing.
Ms Francis asked her rheumatologist for help. “He was holistic and kind enough to suggest that I should enrol in a meditation course. I have been using meditation to cope with pain management both emotionally and physically for over 40 years now.”
Most of this group appreciated the quality of medical care they had generally received but some felt this care could have been delivered with more compassion. They suggested this might have been due to the clinicians being rushed or desensitised to the stigma sometimes associated with visible symptoms.
“I would also love health professionals, especially those who specialise in a certain organ or health condition, to attend to the person who is attached to that organ. At times, I felt like I was a set of eyeballs sitting in a specialist’s office. I wanted the specialist to see the whole person, and the life suspended due to illness,” said Ms Miller.
“I know that health professionals are incredibly busy people and that they cope with high demands on their time, expertise, and energy. However, I would love all health professionals when meeting with a patient, to ask them how they are and listen to the response, even if it is for two to three minutes,” she continued.
Both Ms Miller and Ms Lee said they would have liked to have been directed to relevant peer support groups to help them connect with others going through similar experiences. Information about other resources such as patient organisations or trusted websites would also have been helpful to them.
Case studies published with permission of individuals concerned. Some patient names were changed for anonymity.
GHLF Australia |
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| GHLF Australia is committed to elevating the voices of people living with all types of chronic diseases, including those that cause visible eye symptoms. It helps patients access information and advice that can help them in daily life. GHLF Australia is also building programmes and resources to support those with chronic health conditions.
To help patients with TED find reliable resources and support for their conditions, eye health professionals can share the link to the GHLF Australia TED Education and Advocacy Hub available at: ghlf.org.au/thyroideyedisease. Posters and flyers advertising the TED Hub are also available to display in your practice. Contact: info@ghlf.org.au.
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Rosemary Ainley is the Senior Editor and Advocacy Manager for Global Health Living Foundation Australia. Further information about the organisation is available at: ghlf.org.au.
Reference
- Garvan Institute of Medical Research, Autoimmune diseases (webpage) available at: garvan.org.au/research/diseases/autoimmune-diseases [accessed April 2025].
