Communicating the True Severity of Dry Eye Disease Beyond ‘Dryness’

Key Takeaways:

• Dry eye disease is much more than a simple lack of moisture, making essential tasks like driving or working nearly impossible.
• People with dry eye often follow complex treatment routines to find temporary relief. These routines require a significant amount of time and money.
• People want their clinicians to show more compassion. They need providers to recognize the profound emotional and social impact of the disease.

Chronic dry eye (CDE) rarely occurs in isolation. It is very common for people with CDE to manage other medical conditions at the same time. Health Union’s In America survey data shows that over 40 percent of people with CDE manage at least 1 other comorbidity.¹

For patients living with dry eye, the word "dryness" does not capture the daily struggle. Many people feel their providers do not understand the severity of their symptoms.^1-4

To gain a deeper understanding of the functional and emotional impact of this condition, Health Union surveyed the community. We asked community members to describe how dry eye affects their daily quality of life and what they wish their clinicians understood about their experience.

Their responses reveal that the term "dryness" often fails to capture the true severity of the disease. The following insights highlight the gap between clinical observation and the lived reality of dry eye disease.²

The physical reality of severe pain

Clinicians often use scales to measure discomfort. But the language people use to describe dry eye is far more intense. Here is how they describe it:²

"Always feel like I have grit in my eyes."

"I’m in constant pain, extreme pain, like a cat has scratched me in the eyes and my vision is extremely affected, blurry."

"My eyes are watering constantly and it feels like my eyeballs are burning in my skull."

These symptoms lead to significant vision issues. One person noted that their "vision is extremely affected" and stays "blurry" throughout the day. For many, this makes traditional work and hobbies nearly impossible.²

Functional limits and quality of life

The impact on daily life is clear. Dry eye affects the ability to perform basic tasks. Driving is a common challenge. Some patients must stop driving entirely because of safety concerns.^2,4

One patient notes:²

"The worst part is if I'm driving and my eyes hurt so bad I can't keep them open. I have to lift my eyelid open with my finger and get somewhere I can park."

The environment also plays a role. Patients share that their condition leaves their eyes highly vulnerable to specific environments, weather changes, and indoor triggers like heating or strong scents:²

"They are worse when the air is cold or there is wind blowing."

"My eyes dry when it's hot or when I have heaters on."

"I've noticed a lot of eye problems when I am at work. They probably use strong cleaners that are irritating for my eyes and nose."

These triggers can make it hard to leave the house, which may lead to social isolation. When every environment feels like a threat to eye comfort, people choose to stay home. This isolation can lead to higher rates of depression and anxiety:^2,4

"It has deeply affected my life; I’ve experienced some depression and I no longer feel like going out."

The burden of management

Managing chronic dry eye often feels like a full-time job, involving exhausting daily routines, years of trial and error, and expensive or largely ineffective treatments:^2,4

"My morning and nighttime prep take hours...Pretty much full-time job. I have routines and a lot of things to help me live as comfortably as I can."

"[E]ye drops derived from my blood. Two anti-inflammatories as needed. Three sets of separate, allergy-related eye drops. This is the result of 9 years of trial and error."

"I go through 4 vials of non-preservative drops a day."

Cost is another major barrier. Some procedures cost "900 dollars a session," as one patient mentioned. Some note that their insurance plans will not cover treatment:²

"All the drops in the world would not help other than give temporary, short-lived relief. Unfortunately, I cannot afford the much-needed treatment because they are out of pocket..."

What people wish their clinicians knew

Many people with RA or Sjögren’s syndrome are surprised to learn about the link to dry eye. One person asked, "So dry eye is because of my RA. Why hasn't my doc mentioned this?"^2,3

People wish for more compassion from their medical team. They shared these specific frustrations:^2,4

"Neither my rheumatologist or my eye doc ever helped me with dry eye. That I’ve figured out on my own."

"I wish they really understood how much it impacts the ability to do most of daily living."

"The severity of the disease itself I WISH they'd have more compassion for."

Acknowledging the true dry eye severity

Clinicians can improve care by asking better questions. Instead of asking about general dryness, ask about function. For example, ask if the person can drive, read, or work without pain.

Chronic dry eye is rarely "just dryness." It is a state of constant pain and high management burden. Clinicians have a unique chance to improve patients’ lives by using more compassionate language and acknowledging the functional and emotional impact.⁴