3 Ways I’ve Advocated for My Chronic Dry Eye Treatment

I have found self-advocacy to be invaluable and a little intimidating. I’ve been learning how to find my voice in advocacy for more than 5 years, and I still struggle with it at times. Nonetheless, advocacy is an important skill to develop when you’re dealing with a chronic health issue. These are 3 strategies that have helped me get quality dry eye treatment.

Taking time to prepare

Knowing the symptoms

In order to communicate your needs to your doctor, you must know what they are. Being familiar with your symptoms and articulating your needs clearly will help you and your doctor find the right treatment path.

Part of this prep work is learning about the world of chronic dry eye. Since you’re reading this article, you’ve already taken an important first step. When I first started having dryness in my eyes, I didn’t know where to start.

First, learn about the numerous symptoms of chronic dry eye; this can help you provide detailed descriptions. Do your eyes water? Feel sore? Do you get double vision? I try to make notes on my phone when my symptoms appear and write down my questions as I go, otherwise I'll likely forget.

Creating a list, and picking the right time

By the time my appointment arrives, the list I've created might be quite long. I set aside time to organize my notes in order of importance and then carefully pick the top ones. Realistically, I can't effectively address more than 2 or 3 big issues at one appointment. Then, I write them down; I’ve found that some doctors will pay more attention if they see a written list in my hand.

Another key part of preparing well is picking a good time for your appointment. I try to set myself up for success by scheduling a morning appointment when I know I’m likely to have the most mental clarity and energy.

Addressing your concerns

Getting questions answered

So, you’ve arrived at your appointment with your concerns and requests. But how do you bring them up? This often depends on the temperament of your doctor. Some will ask for an update and give you room to talk, while others will start to blaze through their checklist.

If I’m not given room to share, I try to say something like, “I’ve brought a list of 3 items I’d like to talk about today.” If that still doesn’t slow them down, then I’ll start interjecting my concerns into the conversation. “Yes, I do like the eye drops you prescribed, but I would also like to ask about punctal plugs?”

Being able to get your questions answered is important. Your doctor should clarify what type of dry eye you have, but if they haven't, push for answers. Different types of dry eye require different tests and treatments.

Standing up for your eye health

I’ve had doctors respond with hesitation when I ask for something, but then be willing to try it after I bring up what I’ve learned about a specific symptom I’ve experienced. Being educated about your condition and even bringing background information with you can help.

It takes courage to ask, but standing up for your eye health is critical to getting treatment. As Dr. Danielle Ofri wrote in the New York Times, “… the doctor-patient conversation is the most powerful tool in medicine."

If you’ve really struggled to talk to your doctor, try bringing an ally with you to help. Of course, if you’ve done all of these things to advocate for yourself and you’re not getting anywhere, then the problem likely isn’t you.

Seeking out a new doctor

Don't be discouraged if it takes several tries

The best advocacy strategy I have used is to find a new doctor when your medical needs aren’t being met. I wish all doctors would validate their patients, but that’s not the case. You can’t afford to waste your time with a doctor who doesn’t listen to you.

You’re allowed to fire your doctor, and there’s zero shame in seeking out a second opinion. But try not to be discouraged if it takes several tries to find a quality doctor that’s a good match for you.

Build a great medical team

It takes time to build a great medical team. My current eye doctor is the 6th one I’ve seen since my eye problems began. Each doctor along the way had different issues, from not having the expertise to treat me to not billing my insurance correctly.

While searching for a good doctor, I tried asking friends for recommendations, looking for dry eye specialists, and looking at reviews online. Ultimately, it was luck that I found an attentive and knowledgeable doctor. I’m grateful I was under his care last year when I began to have a corneal melt, as he responded quickly and likely prevented serious damage to my eye. My journey to finding the right doctor was more than worth it.

What advocacy tips do you have?