Yes! Unfortunately, the number of people experiencing dry eye pain,
including people who experience excruciating pain, grows every year.
For some people, on-going contact with other people who experience the
same severe pain (and similar practical and logistical problems)
is essential to their well-being. For others, one or two contacts with
"somebody out there who is like me" reassures them that they are neither
crazy nor lazy nor exaggerating the pain that they feel.
Here are some options:
When talking to other people in a support group or online about dry
eyes, remember to tell them about us! Surviving Dry
Eye Pain at http://www.dryeyepain.com.
If you join the Sjogren's Syndrome
Foundation (SSF), you will receive their newsletter, "The Moisture Seekers,"
which (along with other information) provides and updates
a list of contacts for support groups located in most of the 50 U.S. states
and in several provinces of Canada. It also lists Spanish-speaking contacts,
a contact for people in the U.S. armed forces, contacts for men with Sjogren's
Syndrome, and contacts for young people (under age 39) with Sjogren's Syndrome.
The Sjogren's Syndrome Foundation also provides a more limited list of
support groups online on the SSF Support
Groups page.
Online Resource for People with Dry Eye Caused by Sjogren's Syndrome
The Sjogren's World
(SjogrensWorld.org) Web site provides online contact with other people with
Sjogren's Syndrome through the following methods:
- Live chats
- E-pals
- Instant messaging
- Discussion forums
Visit their site to access links to those resources.
Online Resource for People with Dry Eye Who Do Not Have Sjogren's Syndrome
An online resource for people with dry eye pain with or without Sjogren's is
HealthBoards.com.
Scroll down to Eye & Vision, and then click that link.
You can read what other people have written without registering on HealthBoards.com.
If you want to post messages yourself, you can register for free.
For links to non-U.S. organizations, see the following link to
international Sjogren's Syndrome organizations:
Organizations for Sjogren's
Syndrome. Some of these organizations might contain
information about support groups or online chat groups.
Ask family or friends who react to your efforts to explain that you have a serious
problem by dismissing your concerns as trivial to read the
[Home] page of this Web site.
Explain that chronic dry eye, if ignored, can cause excruciating pain — an eyeball
without tears is like a ball bearing without grease. Depending on the cause and severity of
your dry eye condition, failing to protect your eyes might eventually cause you to develop
ulcers on the surface of your eyes.
Be aware that some people are incapable of empathy. They cannot imagine what you
are experiencing if they have not had the same experience themselves. If this type of
indifference persists despite your efforts at explanation,
the only practical course of action might be to face the fact that some individuals are
just not going to "get it" no matter what you say. Use this as a learning experience
so that you don't treat someone else with a different illness with the same callousness
that someone showed towards you
— the next time you encounter someone with, for example, asthma or diabetes, who
says "I have to do X" or "I cannot do Y" due to their illness, accept what they say
and be supportive.
