Chronic Dry Eye and Preparing for My Next Appointment

Doctor appointments have so many challenges for me. Not only do I have to be ready to stand up for my needs while they evaluate and touch around my eyes, but I have questions and experiences I don’t quite have the words for. Sometimes I wish there was a translator.

However, as I prepare for my next appointment, here are some lessons I’ve learned that will help me better prepare for this appointment.

My recent experience

For instance, at my last appointment the doctor felt my eyes looked pretty good, so she had me schedule 4 months out. Last time she did this, my eyes were a mess when I got back to her. She told me this time to come in early if I need to. I asked, "How I would know that I needed to come back in?"

It was a sincere question, as I have gone in and my eyes seem fine, and she’s telling me they aren’t. And other times they seem irritated, and she’s telling me they look better.

Her answer shocked me, though it shouldn’t have. She said I should come back earlier if my eyes are bothering me. I think I was in shock from the answer. So as her assistant and I walked to the front, I asked again, and she said if I have any eye pain I should come back sooner. I looked at her and said I have some sort of eye pain or discomfort every day. Her response was priceless: "that’s not normal." Right!

3 lessons I have learned from appointments

• I have the right to say no. While this may be easy for some, it’s really hard for me. My eyes are very sensitive because I have several comorbid conditions that affect my eyes. When they evaluate my eyes, they use a Rebound tonometry device to measure eye pressure. I have found some assistants are not able to get it quickly, while others can get it in one or two tries. If they try once or twice and cannot get it, I ask that they allow the doctor’s assistant to do it, because she can get it more easily.
• Having other conditions that also affect my eyes (headache diseases: migraine, cluster headache and SUNCT) I have extra homework to figure out which eye pains and light sensitivities are from chronic dry eye, or if it's from one of my other conditions. My doctor doesn’t have the expertise to understand the other diseases very well, so finding those questions to ask and give her information that she can help me navigate is helpful. Now I am creating a document of symptoms with my colorful descriptions to see if that helps our communication.
• I need to come up with my list of questions now, when my appointment is a couple of weeks away so that I don’t forget. Usually when I go to other doctors I have my priority list. I realize now because this is a newer diagnosis for me, I need to do the same in this situation.

Some questions on my list so far

• What signs should I look for to know to use my PRN eye drops, since my eyes often feel irritated?
• Are there specific signs I can look for to know I should come in sooner, since I have a lot of eye discomfort? I’m still navigating what discomfort I experience is from my chronic dry eye.
• There are times when my eyes “feel fine,” but you as a doctor notice problems, and times when my eyes feel horrible, yet you don’t notice the problems. Can you help me understand what you see and how I can recognize them better?