Here at Glaucoma New Zealand, we aim to improve Kiwis’ understanding of glaucoma and the treatment options available to help to reduce the fear and loneliness that can accompany a glaucoma diagnosis. Watch our video where Professor Helen Danesh-Meyer and Associate Professor Simon Skalicky discuss the importance of knowledge, communication, and support.
We spoke to Associate Professor Simon Skalicky, a Melbourne-based Ophthalmologist and leading researcher on glaucoma and mental health, to get his thoughts and insights on this important topic;
What are the common fears and concerns faced by people with glaucoma, or suspected of having glaucoma?
People have many concerns going through their mind when they first hear that they may have glaucoma, such as whether they will go blind, how expensive treatment will be, and how many medical procedures and appointments they will need over their life. They may have concerns about their job, whether they can drive, and as they age whether they will be able to retain independence.
These concerns can cause a lot of anxiety, which may be completely unfounded if it eventuates that they don’t have glaucoma, or that they only have a risk factor for glaucoma, such as raised eye pressure. If this risk factor gets attended to, and well managed, none of these concerns may ever come to fruition. Even if they do have glaucoma, if detected early and treated correctly, they are likely to see well for the duration of their lives. Only a minority of people with glaucoma develop disease that’s sufficiently advanced to impair their vision and independence. However, if their fears and concerns are not discussed, or acknowledged and raised, then it can stay with them as a lingering doubt.
In what ways can glaucoma impact your life?
Glaucoma is a journey and often it begins early on with an individual being told that they might have some signs of glaucoma after a clinician has looked at the back of their eyes, or performed a scan of the optic nerve. As glaucoma causes loss of vision slowly over time, the individual is unlikely to have noticed any vision loss or sign that they have glaucoma at this early stage, so this initial discussion about glaucoma can come as a shock.
The impact of glaucoma for most people who have either early, or even moderate disease, often relates to treatment rather than vision loss. These early impacts could involve using regular eye drops that can irritate eyes, regular attendances at either the optometrist or ophthalmologist, and having to perform regular tests of vision. In particular, the visual field test is often described as being uncomfortable and anxiety-provoking.
It’s only when glaucoma becomes quite advanced that there may be a need for surgical intervention which may cause an impact. Vision loss itself can also start to impact people’s lives at this advanced stage, such as judging distances to curb so they can walk safely, adjusting from a dark to a light room, or light to dark room, finding dropped objects, and seeing and walking at night.
How are glaucoma and mental health linked?
A number of studies have looked at the link between glaucoma and mental health and they found that people with glaucoma tend to have higher rates of depression and anxiety. It’s currently not clear whether this is specific to glaucoma, or whether it’s common with a lot of chronic diseases, but I do feel that lifestyle changes and the impacts associated with glaucoma can particularly aggravate those conditions.
However, people don’t have glaucoma in isolation; they have other health, societal, social, and economic issues that all interweave in a complex way with their health status and are the determinants of one’s mental health state.
What role do education and support groups play in supporting glaucoma patient mental health and wellbeing?
We did an interesting study a few years ago, looking at the impact of education when someone is first diagnosed with glaucoma. There’s often a shock when that diagnosis happens, and a lot of things go through people’s minds when they hear that they’ve got glaucoma.
In this study, we took a group of newly diagnosed glaucoma patients, and we provided them with specific education about glaucoma that was in addition to what their treating ophthalmologists were telling them. We then measured outcomes, such as anxiety levels and their general comprehension of glaucoma. What we found was that the educational impact did have a positive role in terms of improving their knowledge about glaucoma, their anxiety was reduced, and they felt empowered.
We need to provide educational resources to empower individuals to take control of their own health and not be passive users of healthcare facilities. That’s where great organisations like Glaucoma New Zealand are so important. They offer networks, education, and opportunities to connect so that people don’t feel so isolated and can talk to each other. These support networks are so important for mental health and wellbeing.
We can also support glaucoma patients through online resources such as great websites that are interactive, provide key information succinctly, and incorporate diagrams, through education seminars, and by using social media to learn and connect.
There used to be such a stigma about mental health, and it was never talked about. I feel that mental health does need to be talked about and we need to be our own advocates for that and empower patients through knowledge and education.
Where to go for support
Get in touch with us here at Glaucoma New Zealand if you’re feeling at all isolated or anxious. Call us on freephone 0800 452 826 or email at info@glaucoma.org.nz.
If you need to speak to someone, Need to talk? (Free call or text 1737), Lifeline (0800 54 33 54), and Samaritans (0800 726 666) provide 24/7 mental health helpline support services.