Saturday, July 22, 2017

Getting peer support for dry eye

It's Saturday! This post will be yet shorter and sweeter than the last, and then I'm headed to the movies with my daughter!

Local support groups

There are, unfortunately, very, very few local support groups specifically for dry eye. The only long-term group that I know of, in fact, is the wonderful Orange County Dry Eye Support Group in the LA area. I am hoping that, somewhere in the 2017-2018 timeframe, I'll be able to move forward with my longtime dream to be part of organizing a national network of dry eye support groups.

Meantime, the best resource for local groups is the Sjogrens Syndrome Foundation. (Obviously, many, probably most of you don't have Sjogrens, but their groups are the closest thing there is, since most people with Sjogrens Syndrome have dry eye.)

The SSF local support groups they have are treasure troves of practical information on who the best local dry eye doctors are, and which doctors are attuned to the needs of specific disease groups (Sjogrens, obviously, but others too), and doctors who are equipped for specialty treatments such as autologous serum drops, Lipiflow, etc.

But just the ability to meet up, in person, with other people who understand your situation and may have practical pointers about coping and daily management, is huge. 

Social media blessings and curses

There are the Dry Eye Talk forums, and Sjogrens World, and probably many others by now that I don't even know about.

There are Facebook groups - DryEyeTalk, "Dry Eye, Blepharitis, MGD, Corneal Neuralgia", Dry Eye Syndrome Support Community (run by a couple of ODs) and more. Facebook groups don't lend themselves to the kind of in-depth discussions and archive prowling that forums do, but they're great for immediate connection and feedback.

The BLESSINGS of social media include:
  • Validation! Immediate connections with people who get it. This is really important.
  • Support! Kind voices that will not minimize your experience.
  • Practical tips! A great deal of the lifestyle management information you need and which cannot be had anywhere else.
  • Information! Tons of quite good information on diagnosis, treatment and management that, again, you may not be able to get anywhere else.
The CURSES of social media include:
  • An over-abundance of dry eye paraphernalia-peddling predators (ooooh, that was a really fun term to coin!). They come in many guises, including doctors and patients. They usually come bearing supplements. They exploit the vulnerable.
  • The illusion of understanding trends, especially treatment failures. Hearing similar voices and reading similar experiences online often gives you a completely unrealistic pseudo-insight into what's normal. It's all too easy to think a certain treatment "doesn't work" just because 15 people have dissed it on Facebook in the last 36 hours. One must always bear in mind that only people with a problem post in these forums... all the ones that got better and went away, or at any rate had a successful treatment course, are invisible. You cannot get anything but a heavily skewed perspective on macro trends in a Facebook group.
  • Unhealthy addiction and way too much screen time, which is a bad thing when you have dry eye.
  • All kinds of really, really, really bad ideas about the 'natural' things you should put in your eyes that are "safer" than drugs. I don't like drugs either, but-but-but be reasonable, people :)

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