community support

Vision: Restoring hope

Our community is hurting.

In pain. Confused. Frustrated. Isolated. Most of all, fearful. 

We struggle to find skilled doctors, to get a diagnosis we’re confident of, and most of all to get treatments that relieve our symptoms.

We worry about our work productivity, our ability to continue working or return to work.

We worry about the future, especially if this truly is the “chronic and progressive” disease it’s often described as.

We worry about money for all the treatments that insurance doesn’t cover.

We worry about the toll this is taking on our relationships. A sensation of mounting losses grows, with no hope in sight..

Depression, anxiety, even suicidal ideation are a shockingly routine part of the ocular surface pain experience, which is in itself bewildering for those who experience it. How could a thing so trivial-sounding wreak such havoc on our lives? 

The profound emotional impact of ocular surface disease and ocular surface pain, and the reasons for it, are why our top priority at the Dry Eye Foundation has always been ensuring people have the support lifeline they need when they are struggling.

Current resources

ZOOM GROUPS

We have a number of Zoom support groups that meet weekly, bi-weekly or monthly - on general and specific topics. Some are livestreamed and archived on YouTube, others are private.

Here are some of our current groups:

  • Millenials and Gen-Z

  • Mental health impact of dry eye

  • Recurrent corneal erosions

  • Scleral lens or PROSE users

  • Dry eye patients in the UK

  • People with dry eye from exposure (non-closing eyelids)

Register for a group!

Does Zoom make you nervous? You do not need to turn on your camera. Many people are unable to due to eye pain. You can also check out recordings to see what it’s like first, and reach out to find out which are private and which aren’t.

HELPLINE

We offer one-on-one peer counseling for those who need it. It starts with listening to your story, and helping contextualize your experience. Then we proceed to help identify and prioritize current needs, provide practical help and advice and steer you to the best resources we can find - whether your needs relate more to navigating medical care, addressing practical or financial struggles related to your eye condition, or garnering emotional support and community. Hopefully we can also help match you up with a dry eye buddy, or a Zoom support group.

For many people, these calls are a one-time or occasional need. For some, though, it may involve a weekly call for awhile to check in, be a listening ear, make sure you have support, and see if there are any more ways to help. 

The Dry Eye Helpline is made possible through generous industry sponsorship. Learn more here.

What’s in the works long-term

We see a future with a three-level peer-staffed support system:

  • Helpline, staffed by peer mentors who have gone through extensive training and are supervised and advised by career mental health professionals. 

  • Dry eye buddy system, with trained peer volunteers who provide regular phone or in person support

  • Zoom support groups, led by trained peer volunteers, including six-week courses for new members to get their bearings and learn new coping skills.

This future takes our current service to a new level, makes it sustainable by providing extensive mentoring and peer training, and extends its reach so that distressed dry eye patients can learn sooner that help is available.

Can you help us achieve this?

We are currently working on developing protocols for the helpline and getting ready to start creating training materials later in 2022.

Ways you can help:

  • Donate so that we can fund staffing.

  • Volunteer to be a dry eye buddy, to help moderate a Facebook or forum group, or to help moderate a Zoom group

  • Are you a mental health professional? We are seeking volunteers for our Helpline working group, where we are working on projects like creating educational materials to help MHPs better understand and assist people with ocular surface pain.

Just a visitor? Wondering how “dry eye” can possibly be so devastating?

Most people’s understanding of “dry eye” is based entirely on their personal experience of transient dry eye symptoms. Almost everyone has experienced such symptoms. It’s how your eyes feel when you’ve been awake for 24 hours, or you’ve been outdoors too long on a windy day without sunglasses, or after a night of indulgence, or you’ve worn your contacts too long at a stretch, or the humidity at your workplace dips to 20%. It’s uncomfortable, but at most, you put in some eyedrops and it gets better. That’s all it is, right? 

No. 

Ocular surface pain - the constellation of ways one’s eyes can hurt due to ocular surface diseases and neuropathic corneal pain conditions, often exacerbated by environment, screen use (a/k/a employment, for many of us) and drug and device side effects - is a devastating experience. 

It often impairs basic daily activities, like taking a walk outdoors, driving, working, sleeping - as well as the things that bring us pleasure, from reading to outdoor hobbies to socializing and so many others. People with ocular surface pain often churn through treatment after treatment and doctor after doctor before getting on a path that works for them - and with each and every failure, it becomes that much harder to visualize the possibility that things can get better.

If someone in your life has ocular surface pain, one of the best ways you can help them is by learning more about it.