Let’s Discuss Self-Advocacy
Coping with COPD begins by finding a great doctor. You and your doctor work together to create a COPD control team. Your doctor is the medical expert and you are the patient expert. This means that you are the expert on you. This makes you your own best advocate and begins our discussion on self-advocacy.
What is self-advocacy?
In the past, doctors diagnosed conditions, gave instructions, and expected that we as patients abided. That was the way it was. The problem with this old approach is it created a disconnect. Doctors would often diagnose COPD and then treat their patients in a cookbook fashion. This means they treated all their patients the same.
This sameness may have worked fine for many living with COPD, however, COPD is a heterogeneous disease. This means it affects all of us in unique ways. Therefore, a one-size-fits-all approach is often ineffective, meaning some people were not getting the best treatment approach for them.
There is no perfect system. But, having the doctor and patient work together as a team seems like it’s far superior to that old system. Today, the emphasis is that doctors and patients work together as a team. As a team, you gather information. As a team, you analyze that information and consider the best path for you moving forward.
In other words, you work together with your physician to best manage your disease, making it very important for you to effectively represent yourself. This is where self-advocacy fits in. Self-advocacy means that you advocate on your own behalf. You represent yourself.
How do you best represent yourself?
Your doctor can help you get started but he or she cannot possibly teach you everything you need to know about COPD. There is just so much information available today. Researchers are learning so much so fast it’s sometimes even hard for doctors to keep up. Plus, patient/doctor meeting times are often cut short by time limitations.
So, your doctor can help lead you to sources of information. There may be pamphlets your doctor can give you. There may be a website with good information. And of course, it’s up to you to become educated on your disease. You can also find your own sources of information. A good example is sites like ours. The idea here is the more you know, the better equipped you are to advocate for yourself.
Plus there are all these new treatment options out there. Would one of these new treatment options benefit you? Would one of them benefit me? I don’t like to step on my doctor’s toes and tell him what I want so usually what I like to do is pose questions. I might say something like, “Hey, what do you think about x new treatment? Do you think I would benefit from this?"
Sometimes my ideas get shot down, “No! You don’t need that!” Although, other times it segues into interesting discussions. Sometimes we table the idea and both decide to study it further. Then we continue the discussion at our next meeting.
Another thing I do is take notes. I have a history of forgetting what I want to talk about. Sometimes I chicken out and decide not to mention a complaint I might have. Then I leave appointments with unanswered questions and lingering concerns. I don’t like that so I have learned to take notes. I write down an agenda of what to discuss. This helps me to make the most of our meetings.
That’s how I advocate for myself.
How do you advocate for yourself?
My strategy works for me and my phlegmatic personality. As a respiratory therapist, I have seen various other strategies. I suppose this has helped me pick up some ideas over the years. I’ve also picked up ideas by reading articles written by other people living with chronic diseases. That’s another reason sites like these are nice places to hang out.
So, what are your thoughts on self-advocacy? What strategies help you best advocate for yourself? Please share in the comments below.
How has your experience been navigating the healthcare system as someone with COPD?