Expanding My Circle of Support for My Dry Eye Disease

How are you doing? This question is asked of most everyone on a daily basis. But when you walk around with a chronic yet invisible condition like dry eye disease, you have a daily decision to make when asked this question: You can either go with the usual response like "doing well" or "I’m fine," or you can be honest – today is hard because my eyes are in constant pain.

Giving an honest answer

This was the situation I found myself in after weeks of a sudden onslaught of dry eye symptoms. I had tried everything, and my eyes still weren’t getting any better. So when people would ask how I was doing, I eventually decided to be, well – honest. This is the true test of a relationship, right?

“Not great,” I would say. This response would give me the opportunity to open up about how I was struggling. An honest answer is not always what people expect to hear, but I have learned that expanding my circle of those who know about my condition is important.

Dry eye goes unseen or unnoticed by everyone around us because it is not always a visible condition. It doesn’t require a wheelchair or crutches; we don’t show many physical signs. The only person to whom dry eye disease is visible can be the person whose vision it is affecting.

Receiving more support and compassion

So I decided to open up. I shared with my family, my friends, my coworkers, and people at my church. Whenever I was given the opportunity, I shared. This led to increased support and compassion. No, I didn’t want people to feel sorry for me. I just wanted them to be aware – and maybe a little bit understanding.

Early on, I remember briefly telling a friend about my dry eye issues. Later, we were able to go on a walk together, and I told her the full story of everything I had tried to help my eyes, all about my doctor’s visits, and about my constant pain. She was surprised at the degree to which this was affecting me and admitted that she had initially thought, “Just put some eyedrops in. No big deal.”

But it was a big deal, as she eventually realized, and now I have one more person in my corner who cares and checks in on how I am really doing. When she asks how I am doing, there is meaning behind it.

Encouraging others to open up

Opening up about chronic dry eyes can also lead other people to share unseen difficulties that they may be facing. Recently, I was leading a women’s class at my church, and I had a great opportunity to share my dry eye story because of its undeniable connection with the content we were studying.

After sharing my testimony, a lady whom I’ve known just casually for years approached me and shared some similar struggles. After having COVID, she has had continued symptoms like brain fog and extreme dry mouth. She began exploring possibilities of what could be causing her dry mouth, including autoimmune diseases like Sjogren's syndrome. My dry eye specialist had actually mentioned this syndrome as a possible cause for my dry eye at my first visit.

This lady and I talked for about 30 minutes about our individual struggles but also about our shared fears and anxieties. We were able to pray for one another, and we continually check in to see if the other has had any improvements, physically and emotionally. Had I not taken this opportunity to share, I would not have the support of someone who can really empathize with me, nor would I have the privilege of bearing her burden.

Knowing the struggle

Finding someone who understands is important, and I’ve also found this in online communities. Originally, I joined a Facebook group for dry eye syndrome to learn more about the condition and its causes and to ask questions about treatments. In addition to all of that, I found people who were hurting just like I was.

No one truly understands the constant misery of chronic dry eye except for those who are going through it. This was a statement I saw repeated in post after post. People who have dealt with this disease are not only able to make me feel that I am normal in feeling the way that I am feeling, but they are also extremely willing to share anything that has helped them. They know the struggle, and they want to help.

Now I have people ask about my eyes. My circle of support is a little bigger, and my life with dry eyes is a little better.

Have you shared your dry eye story with those around you? If so, what was your experience?