Being Your Own Advocate

One of the hardest things about learning you have a chronic health issue is there’s not always someone there at your side advocating for you. Some of us do have a spouse, partner, or parent joining us on this journey, but many of us don’t. And often that person doesn’t really understand what you’re going through, or doesn’t have any insight into your experience.

I have had to learn the hard way about advocating for myself. In many ways, this feels like a theme for me throughout my life, but especially when it’s come to health issues. When I first started seeing doctors for a different chronic health issue, I went to my appointments assuming that the doctor would figure it all out for me. I trusted they would come up with the diagnosis and find the right treatment.

Doctors are human too

Soon I learned my first lesson, that doctors are human too. They are overloaded with patients day in and day out, and sometimes they just aren’t a good fit for you, for a variety of reasons. Maybe they know a lot about eyes, but chronic dry eye isn’t their specialty.

This has been the case for me with several doctors I’ve seen. I went many years without having a clear diagnosis and tried treatments that didn’t really seem to be working at all. It’s such a frustrating experience, but I’ve always refused to give up.

Being a natural student, I felt the need to at least try to figure it out. I wanted to learn everything I could by doing research and hearing from other people with my condition. This impulse has served me well with many health issues over the years, and certainly with chronic dry eye. I’ve wanted to learn why I have dry eye and what can be done about it. And I have learned so much.

I wouldn’t say I’m an expert, but I feel like an informed patient. When I go into appointments now, I often have a sticky note with a few questions I have or symptoms that seem really important. It can be so easy to forget, and then 5 minutes after the appointment in the car you think “oh wait, why didn’t I ask about that?”

A good doctor-patient relationship

The next thing I’ve learned is just as important. Although I have respect for every eye doctor I see, I’m not afraid anymore to push for more details or a better explanation about any diagnosis they have for me, or why they’ve decided on a certain treatment plan. Getting informed helps you get to the point where you can do that.

Any doctor you see owes you answers to your questions and explanations for their medical opinions. As a patient you deserve that degree of respect. It’s your body after all. I’m not sure I always knew this, and I may have felt like I was being impolite quizzing doctors. But now I realize a good doctor-patient relationship shows respect on both sides.

Remembering “hey, this is my body and this is my life” is so important. A doctor may recommend a certain prescription or treatment to me, but I try to always remember that ultimately this is my choice, not theirs. If it doesn’t sit well with me, I need to find out why before going forward with it. Maybe there are more questions I need to ask first. Maybe it’s not right for me. It’s okay to say no—I remind myself of that often.

Self-advocacy

What self-advocacy really means for me is believing in myself and understanding I have rights as a patient. For me, even if I’m sitting there feeling nervous in front of this doctor I’ve never met before, I remind myself they are here to help me.

I’m not just a screen full of medical data, I’m a person with a health issue who deserves respect.