Living with dry eye in a pandemic
Watch/Listen
July 17, 2020 episode
Hosts
Rebecca Petris moderated the discussions
Aidan Moore managed production and technical support
Panelists
Our panelists were asked to introduce themselves by sharing where they live, what they’re drinking, how long they’ve had dry eye and why, where they are in their journey, and what drops they used most recently.
MANDY lives in Madison, Wisconsin and joined Happy Hour with a glass of Nebbiolo Di Faro. Over the course of Mandy’s 23 year dry eye journey (which started as aqueous deficient dry eye at age 19) she’s tried virtually everything available, and described the many types of things she’s used at different stages in the journey, from drops and devices to moisture chamber glasses (which she is wearing in the video). Some things have worked, some thing, like - recently - scleral lenses, haven’t for various reasons. Now, she’s just trying to manage it, and ignore pain as much as possible. The most recent drops Mandy used today were Refresh Plus.
LAURA lives in Washington state and joined us with a glass of iced coffee! Laura has Limbal Stem Cell Deficiency (LSCD) and a complex history of corneal disease that includes as many as nine surgeries. Her journey includes, in addition to dry eye, things like pterygium surgeries, Salzmann’s nodules, superficial keratectomies, filament and filament removals. Next week Laura is getting her first scleral lenses and is excited about the potential some improvements; her surgeon views sclerals as a good way to keep further surgery at bay for the present. The most recent drops she used were autologous serum tears, which she finds very helpful, particularly for light sensitivity.
DEBBIE: Debbie lives in Beverly, Massachusetts (near Boston). She joined us with water, which is nearly all she drinks. Debbie’s journey began in 2010 with an infection and complications both relating to a smartplug that had been inserted. Debbie has had eleven surgeries and was left with a lot of scarring. She also lost function in all but five meibomian glands. Yet, later in the journey, she was able to get on an effective treatment plan as a result of which most of her glands are open today. She feels she was doing great in her journey until Coronavirus and has had serious setbacks from the increased computer time, but in general, she is living alongside dry eye and knows it will require long-term maintenance but it is not central to her life now. The last drops she used were autologous serum, which she uses eight times daily.
REBECCA is in Poulsbo, Washington and joined with a bottle of kombucha. Her dry eye and other eye issues began with LASIK in 2001. She describes her status as mostly coasting, with periodic ups and downs. New issues come up, or old things flare up, she finds ways to deal and moves on. The newest thing in her journey is exploring the possibility of cataract surgery due to worsening vision, especially at night. She rarely uses drops as she wears scleral lenses almost all her waking hours.
Highlights
QUESTION 1: How has working from home due to COVID-19 affected your eyes (for better, for worse), and how are you coping?
Debbie is a college professor who was teaching five graduate classes at the time of the shutdown, and had to quickly pivot to doing all teaching online. The increase of computer time for work has worsened her eye condition.
Positives: You can control your environment, and stress is less at home. Able to focus more on diet and exercise, which takes the focus away from her eyes.
Negatives: Increased computer time, and having to forego computer use for pleasure and social connection.
Strategies include Flux software, a screen over her monitor, a mini humidifier and goggles or dry eye glasses. Debbie showed what appeared to be a pair of Ziena Verona dry eye glasses.
Laura is a school psychologist and feels that on balance, working from home has been better, not worse, for her eyes, though like many school staff she wants to go back. Before getting into working from home issues Laura made a point of emphasizing how everyone on the panel may have stories that sound scary, but they are also leading functional, productive lives, and Laura felt that that ought to be an encouraging takeaway for everyone watching.
Positives: Laura’s workplace presents challenges such as fluorescent lighting and iffy heating/cooling, so she appreciates being able to control lighting and temperatures for her eye needs. She has noticed that with increased phone time her eyes are feeling better, perhaps due to lids providing more protected time. She is happy to not have to deal with the commute during early/late hours as her night vision is poor.
Strategies: Warm compresses (buckwheat). She emphasized that warm compresses have to be something that retains heat well, not just a washcloth. Knowing when to stop is important to her.
QUESTION 2: Does wearing a mask affect your eyes? If so, how are you doing with it?
Mandy gets frustrated with her dry eye glasses fogging up while wearing a mask, and finds her eyes getting irritated and itchy from air funneled from the mask to her eyes, so she tends to avoid having to go places where social distancing isn’t enough. She watched a YouTube video about the kleenex-under-the-mask strategy that is supposed to help this and she intends to try that while attending a baby shower tomorrow.
Laura is dependent on glasses and has found a mask with a good nose clip on it (“Outdoor Research” brand) and which is quite breathable. She finds that close attention to the nose bridge structure is essential to prevent fogging.
Debbie dislikes wearing masks for reasons including fragile skin. She has a favorite mask (Solumbra brand, about $39) which she can tolerate for short periods of time and which dries quickly after washing.
QUESTION 3: How has the pandemic affected your access to doctors, treatments and products?
Laura was in the middle of an infection when the shutdown came. Her doctor ensured she had continued access to care, though visits are different. The main inconvenience she experienced from the shutdown was delays to getting fitted with scleral lenses.
Debbie normally gets IPL every three months and this was not available during the shutdown, though she was the first patient back in when they re-opened. They did IPL with her mask on. Getting meibomian gland expression was complicated and limited by workarounds required to address the lack of an acceptable way to sterilize the device. She’s very happy that she’s had continued access to autologous serum eye drop preparation. She’s concerned, though, about an IPL treatment backlog.
Mandy had a telemedicine appointment for dry eye. She finds telemedicine annoying for dry eye because you can’t be properly examined, and she feels dry eye care is going to be harder for many people who are just getting started with dry eye treatment due to limited availability. She feels online support groups are helpful for people getting started and talked about the importance of mentor/mentee relationships as people get started. She feels she is teaching her doctors about what’s available for dry eye.
Question 4: Mental health and dry eye… in a pandemic. Comments?
Rebecca explained for context that dry eye has a well established relationship with depression and anxiety.
Debbie was a suicide prevention counselor in college. She emphasized that feelings need to be acknowledged as realities, but also that we need to remember that the problems are not forever. Just as the pandemic is not forever, neither are dry eye symptoms - she described having had a time when she felt her eyes would never feel okay again. She emphasized that it’s the small things that make a difference with dry eye. Audible books have been very important for Debbie.
Laura said that she trends anxious, and jokes about her ophthalmologist appointments doubling as mental health appointments. She feels it’s important for providers to be “non-reactive”, and whom you genuinely like and connect with help exponentially. She has observed her eye comfort improving subjectively after an eye appointment simply due to reassurance. Laura also finds it helpful to simply actively acknowledge bad days - as such, understanding that bad days can exist without any long term implications. Last, she tries to focus on the fact that there is always more.
The panel discussion wrapped up and we opened things up for attendees to join in with audio and video.
Quotable Quotes
Most of the time I can do a lot of the things that I want to do.
- Debbie
It’s a problem, for sure, but it’s a manageable one, if you stick with it and you have good people.
- Laura
Instead of being constantly depressed, I’m only sometimes depressed!
- Mandy
When I’m at the computer, I’m supposed to drink drink drink and blink blink blink!
- Debbie
Sometimes I have to close my eyes and just be done.
- Laura
When you have dry eye and you’re deprived of a lot things, anything you can do to make your life a little happier (like the coffee that I have found) is good.
- Debbie
There are ups and downs… you can’t let those moments - when it’s not going well - become too powerful, because the next day could be better… You have to be open to the fact that it’s a marathon, not a sprint.
- Laura
I said to my husband, ‘I can’t believe that this is my life!’ But it is, and it’s a good life, but the dry eye piece is hard.
- Debbie