Becoming My Own Dry Eye Care Advocate: Part 1

Dry eye is a multifactorial disease, and treatment often takes a multifaceted approach. Every case is different. No silver bullet treatment exists – what works for one person may not work for another. Successful treatment is highly subjective. Therefore, my voice and my experience matter when I’m advocating for my care. These are some things I’ve learned during my dry eye journey. You can also read Part 2.

Like a switch flipped

I have aqueous deficient dry eye, but I only came to know this after much trial and error. As a longtime contact lens wearer, I’ve struggled with minor dry eye issues over the years. But several months ago, as of my writing this, I had a sudden onset of debilitating dry eye – almost like a switch was flipped.

I initially thought that I would lay off of my contact lenses for a few days and everything would be back to normal. That didn’t happen. My symptoms only worsened. My eyes became gritty, itchy, and painful, like sand was constantly in them. I tried some over-the-counter drops, but they didn’t really help. Becoming more and more worried, I scheduled an appointment with my eye doctor.

Undergoing a procedure

He conducted a brief exam and said that I should start using preservative-free drops (the ones in the little individual vials; frequent use of drops with preservatives can further irritate the eyes). And he suggested a first option, temporary punctal plugs: tiny inserts in my lower puncta, the openings to the tear ducts. These dissolvable collagen ones would hopefully help my eyes retain some moisture, keeping tears on the surface of my eye for a longer period of time.

I had a difficult time discerning whether or not the plugs really helped, but I was desperate for a next step. I went back soon after and had the semi-permanent silicone plugs inserted; they have a little mushroom tip that sticks out of the punctum so that they can be easily removed.

My doctor said that I should come back in about a month. Again, I couldn’t tell if these larger, more permanent plugs helped. I was still in a lot of pain. That’s when I started my own research.

Doing my own research

Having never dealt with a chronic health condition before this, I had always just relied on my doctor’s advice for various short-term illnesses. But dry eye is different – it’s complicated. I needed to learn as much as I could on my own, so that I could be educated to help myself alongside my doctor.

I searched the internet for the various factors that contribute to dry eye, and I learned that there are two types: evaporative dry eye (here the meibomian glands don’t produce enough of the oily lipid tear layer to hold the watery tears on the eye) and aqueous deficient dry eye (in which the lacrimal glands do not produce enough wet tears).

I also searched for possible treatment methods that I could ask about at my next appointment, and I started doing what I could at home to help my condition.

Not making the progress I wanted

After a couple of weeks of trying various things with minimal results, I was still not making the progress I wanted. Getting through my days was a chore, and I was waking up multiple times a night to put in drops. I went back to my doctor.

At this point I had started an anti-inflammatory diet, and I mentioned this to him, along with the other things that I was doing. Even though I asked about other treatment options, he basically said that I should wait and see if the diet change would work and come back in three months.

A turning point

This was a turning point for me. After over two months with unbearable dry eyes and my doctor offering little additional help, I decided that I needed to do something. I was in too much pain to just wait, and I feared that waiting too long would do permanent damage to my eyes.

I had to become my own dry eye care advocate. Only I knew how I was feeling. Only I knew my experience. And no one would care about my care as much as I would. I needed a second opinion.

How have you advocated for your own dry eye care: have you started your own research? Have you seen your doctor or found a specialist?