How DED Can Impact Mental Health, Part I
with Anu Chiarelli, MA, RN
Dry eye is a disease that affects the ocular surface and tear film. Physical symptoms and the frequency symptoms occur can vary, ranging from mild irritation to chronic pain. More physical symptoms often correlate to a greater reduction of physical quality of life, as these physical symptoms can impact everything from work, studies, hobbies, and relationships. While the physical discomfort associated with dry eye disease (DED) is important to discuss, this two-part post will examine the impact DED can have on mental health and mental quality of life.
Mental health and mental quality of life should be an important discussion for dry eye sufferers to have with their primary physician or eye care professional. It has been shown that patients who experience highly symptomatic dry eye also experience a substantial reduction in both physical and mental quality of life.[i] While other eye diseases and many other chronic conditions can primarily affect either mental or physical quality of life, highly symptomatic dry eye can substantially reduce both and should serve to emphasise that dry eye is a serious disease that needs careful diagnosis and management.
Here to discuss the association between DED and mental health in this two-part blog series is Anu Chiarelli, a counselling therapist, registered nurse, and dry eye patient. Anu has experience providing therapy to individuals, couples, and healthcare professionals on topics that include trauma, addictions, and depression. Anu is a proponent for treatments that are personalized, holistic, and integrative and believes in the importance of identifying root causes and underlying issues. Through both her professional and personal experiences, Anu is well-qualified to speak on the association between DED and mental health.
Content warning: this post discusses suicidal thoughts and trauma.
[Start of Interview}
To start, can you discuss how DED can negatively affect mental health?
[Anu]: DED can cause problems with sleep. 50% of people with dry eye have problems with sleep and lack of sleep has an adverse effect on mental health.
DED can cause grief over loss of health. We’ve got this chronic, progressive disease for which there is no cure and that can cause grief.
DED causes loss of enjoyment in life because we are unable to do many of the activities that we used to enjoy. Others may not understand this, and you get the kind of advice like, “well, just put drops in your eyes,” which only minimizes this disease.
DED makes life more complicated since you need to plan for everything, even day-to-day activities like driving, grocery shopping, computer use, and even the weather. If it’s sunny, or windy, or cold, that is going to bother your eyes, and with the weather knowing whether the heating, air conditioning, or a fan will be on, because all these things will bother your eyes.
With DED, you may not feel attractive since you may have red eyes, swollen eyelids, constant tearing, and can’t wear makeup. That is going to affect your confidence and self-esteem.
DED can cause loss of productivity in work or academic plans. When you can’t do your life’s work then that can mean you lose meaning and purpose in life, which is linked to depression. Since you can’t be as productive and you don’t accomplish as much, it kind of makes you feel useless.
DED can cause financial concerns because treatment is expensive. You may not be able to afford or get the ideal/best treatment. An example is IPL, some people can’t afford IPL so they are given antibiotics and that is an inferior treatment. Financial concerns can affect mental health and you can’t afford or get the treatment that will help you feel better.
There can be a lot of anxiety caused by disease, especially chronic disease. Can you illustrate some of the anxieties that DED sufferers may experience?
[Anu]: First, there may be anxiety at the beginning of the day. Often, the first thought is, “how bad will my eyes feel today.” Because DED is unpredictable, you don’t know what kind of day you’re going to have and unpredictability, or when you can’t control something, causes anxiety.
Then, there is treatment-related anxiety. Because there is no standardized treatment with much evidence, we have questions and anxieties about whether the treatment is going to cause harm. Some questions can be “is this for sure going to be ok for my eyes,” or “will it be effective or am I wasting my money?” Then there are questions like “what if the treatment doesn’t work,” and “if this doesn’t work, then will anything work?”
There is anxiety about the disease getting worse, especially because DED is progressive, which can lead to worrying about being able to take care of your family, being able to work, or providing for yourself. Some people are afraid of going blind or wonder if their eyes will be properly cared for if they end up in long-term care.
The anxiety doesn’t ever go away, even when, like me, you’ve been good for a long time. Every time I have a bit of dryness I think, “what’s going on, is it going to get worse again?” The anxiety is there even when you feel good because the traumatic memory of those horrible days is still there.
Are there any treatments that people were particularly worried about?
[Anu]: No, any DED treatment people worry about. For example, antibiotics, they wonder what are the short- and long-term effects. Or IPL, they wonder if the light is going to damage their eyes. Even gland expression, they wonder if it is going to harm the delicate glands. Basically, any DED treatment people will worry about because they are all relatively new and because there isn’t a lot of research.
How does pain play a role in DED and mental health?
[Anu]: One thing that I think it is important for eye doctors to remember is that we can have a lot of pain even without significant signs of dry eye, so it is important that our pain is taken seriously. Your eyes can look good, and you can still be suffering a lot of pain.
Dry eye causes varying degrees of pain. For some, it is discomfort that can be relieved easily with drops, but for others, it is severe, constant pain. Pain is harmful for mental health, I think that is well proven, and pain increases your risk of depression, anxiety, and even PTSD. Depression and anxiety can also increase pain perception, so it is a vicious cycle. When you are more anxious and tense you are more sensitive to pain, and you perceive pain more. Pain with DED can even lead to thoughts like “can I just get my eyes removed?” You just want the pain to go away, so if you lose your eyes then you won’t have the pain.
Pain can lead to suicidal thoughts, and that’s another risk. Dry eye pain is very difficult to treat, you can’t just take Tylenol. We also worry about taking a lot of medications because often the side effect is dry eye.
While DED can affect mental health, is it also reciprocal, as in does anxiety and depression affect how the eyes feel?
[Anu]: Does depression and anxiety affect how the eyes feel? Absolutely. It’s important to remember that the mind and body are one. You can’t separate it. If someone has stressors, if they have a mental disorder, then they tend to have an increased perception of pain and more intense symptoms of dry eyes in general.
The other part of this is that dry eyes is an inflammatory illness and inflammation is a driver of DED. Stress causes inflammation in the body. So, it would make sense that if you have overall more inflammation then it can cause dry eyes to get worse.
We know that trauma leads to an increase in the risk of chronic illness. There are multiple factors that go into dry eye and psychological trauma and stressors such as depression, anxiety, mental health issues, can also be contributing factors. It’s not the cause, but it can contribute along with other things like hormones, contact lens use, etc. You can’t say any one thing is the cause, for example you can’t say “hormones cause” because otherwise everyone going through menopause would have dry eyes. Also, not everybody with trauma gets dry eyes, but it can be one factor.
You have spoken before on how chronic illnesses, such as DED, can lead to an existential crisis. Can you explain more what that means?
[Anu]: First, what is an existential crisis? It refers to questioning whether one’s life has meaning, purpose, and value. A chronic illness of any kind can take away your ability to do things that you used to enjoy, or things that used to give your life meaning and purpose.
You start questioning what is the purpose of my life? You question the purpose of suffering, asking why am I suffering like this? During some of my darkest times, I wrote things like “what is the suffering supposed to teach me? Am I wasting my life because I’m not doing the things that I used to be able to do?” It felt like everything was being taken away from me. I thought if I don’t get better, if this is the way my life is going to be, and if I don’t have any meaning and purpose, then I might as well die. What is the point of living if you don’t have meaning and purpose? Everybody needs that.
Is DED associated with suicidal thoughts?
[Anu]: From my personal experience I wasn’t actively suicidal in that my work and my family kept me alive. Now interestingly, when you think about it, if work is so important that it keeps you alive and if that is taken away, then how would you feel? I was able to still carry on and then I got better, but I was thinking “if this is it, do I really want to live like this?”
Then you worry about being a burden to your family. If your family keeps you alive but now, you’re a burden to your family, you start thinking maybe my family is better off if I’m dead. You don’t want to burden your family.
From literature that I’ve read and through my experience with other dry eye patients it is not rare that people have actual suicidal thoughts. So yes, DED is significantly associated with suicidal thoughts.
Is there a difference between having suicidal thoughts and being at risk for suicide?
[Anu]: Anybody that has suicidal thoughts is at risk for suicide. It doesn’t mean that if you have thoughts about death that you’re going to kill yourself. When someone thinks about suicide it usually means that they want relief from whatever the pain is, whether physical, emotional, or mental. They want relief from that pain but they don’t see any other way out other than killing themselves. If you can help them with the pain, then they’re not going to kill themselves. It is pain that they want relief from.
[End of Part I of Interview]
Please click this link for Part II of this interview which focuses on the benefits of personalized and holistic treatment plans for both ocular and mental health.
Please seek help if you or anyone you know are having suicidal thoughts.
[i] Morthen, Mathias Kaurstad, Morten Schjerven Magno, Tor Paaske Utheim, Harold Snieder, Christopher J Hammond, and Jelle Vehof. 2021. “The Physical and Mental Burden of Dry Eye Disease: A Large Population-Based Study Investigating the Relationship with Health-Related pulation studied. Quality of Life and Its Determinants.” The Ocular Surface 21: 107–17. https://doi.org/10.1016/j.jtos.2021.05.006.