Advocacy and You
The symbol for COPD awareness is an orange ribbon. Did you know that? If you did, that’s wonderful. You’re ahead of the learning curve for most people in society. If you didn’t, you’re definitely not alone. Most people don’t know what the orange ribbon represents.
It is a scary diagnosis
I didn’t either when I was diagnosed at age 42 in 2012. I didn’t know very much about COPD at all, even though my mother-in-law had passed away from it a few years earlier. I knew you could get it without smoking because neither she nor I ever smoked. But beyond that, I was pretty ignorant. Many people who are diagnosed with COPD are like I was – not knowing much about the disease or how it would progress or the prognosis. I think this element of the unknown is part of the reason it is a scary diagnosis for a lot of us.
How do we do these things?
So it would be great to have better education and more research, which will hopefully lead one day to a cure. How do we make more people aware, you ask? How can we help others understand, you ask? And how do we get more funding for research, you ask? Good questions, and luckily ones I have an answer for, or this would be a really short article:
What does that mean? The Merriam-Webster Dictionary defines an “advocate” as 1: one who pleads the cause of another, specifically, one who pleads the cause of another before a tribunal or judicial court; 2: one who defends or maintains a cause or proposal; 3: one who supports or promotes the interests of a cause or group.1
How can you become an advocate?
I can tell you what I did. First, I learned to advocate for myself. And that’s important. I felt that if I didn’t know what was happening to my lungs, the uncertainty would add extra anxiety. I sure didn’t need that. I also felt that the more I knew, the better position I would be in to fight this thing and be a patient who could contribute information and make informed choices on my care.
More curiosity than any cat
The first thing I did was ask my doctor and pulmonologist and allergy/asthma doctor a lot of questions. I wanted to know what form of COPD I had, and what emphysema and chronic bronchitis and asthma were. I wanted to understand everything about my Pulmonary Function Test results. I wanted to know what a peak flow meter was and how it worked. I wanted to know what each medicine was that they prescribed and how it was supposed to help my symptoms. I had more curiosity than any cat.
Now a savvy advocate
I also read studies and papers on COPD published by peer-reviewed medical journals. A lot are online and available to read for free. I also read as much as I could about chronic bronchitis and asthma and allergies, which are what I have. It’s been several years since my diagnosis and first confused reaction, and now I consider myself not only pretty savvy about the disease, but also an advocate for COPD.
How do you self-advocate?
Learn. Do what I did and ask questions and read articles and studies. Make sure your doctor or specialist explains your treatment and your medication. If you can, get a second opinion. If you’re not happy with your healthcare team, if you can (I know it can be difficult or impossible with some insurance companies), find a new team. Speak up with your doctors and specialists. Talk to them and ask questions until you understand.
Advocate for yourself through your friends and family, too. Share articles about COPD with them. Post on whatever platform of social media you use. Tell people how you feel, physically and emotionally. And tell them the hard facts about what COPD does to you physically and emotionally.
So how can you advocate for more widespread education and research for all COPD patients? There are large organizations, such as the COPD Foundation and the American Lung Association, which advocate for COPD research, initiatives, and law reform. Join them. It’s free and most of them have advocacy programs you can register for. They will keep you informed of any upcoming bills before Congress that may affect you. These large organizations also offer information on their future and what you can do to advocate as a COPD patient.
Alert your political representatives
Write or call your political representatives. They are supposed to work for us, so let’s let them know we need more research and a cure. Check out our recent article 'Your Letter to Congress' for guidance and a template. Tell them what your life is like having COPD and how they can help you. Tell them how you as a constituent want them to vote on issues like Social Security and health care. Contact not only your federal representative but your state and local reps as well.
You can make a difference
You can make a difference.
In conclusion, you have a voice – a soft or loud one, doesn’t matter. The more voices that join together will result in one big cacophony of a chorus for us, asking more questions and demanding more answers. With COPD being the third largest cause of death here in the United States, we deserve it.
And someday, our choir will be so loud everyone will hear it.
Have you ever had to educate a doctor?