Health Advocacy: Let Your Story Make a Difference

I have recently started volunteering with National Patient Advocate Foundation’s (NPAF). This organization represents the voices of patients who, like me, are coping with serious and chronic illnesses nationwide. They serve as the advocacy affiliate of Patient Advocate Foundation (PAF). We had a Can We Talk Raleigh event early this month at the NC Medical Society where I had the privilege of participating in a panel discussion.

Those of you who know me understand my passion for my volunteer work. I appreciate the opportunity to tell my story in an effort to help myself, my daughter and other patients with psoriatic disease. I want to educate people around me so they can recognize the symptoms of psoriasis and psoriatic arthritis. I want to use my voice to ensure that lawmakers take people with chronic conditions into account when making decisions. Most importantly, I want fellow patients to learn from my experiences so they can make decisions that will have a positive impact on their lives.

Our agenda at the Can We Talk Raleigh event was about person-centered care. If that term is new to you, you’re not alone. NPAF defines person-centered care as the recognition of patients’ health problems as they see them. That’s right. This line of thought makes the patients’ opinion the one that matters the most. We are the ones who lives in these bodies – these bodies with chronic illness. It makes sense that our concerns weigh most heavily when we seek treatment. Some of the things that matter most to people are:

• How can I control the pain so that I can still do the things I love?
• Will I still be able to work? 
• How much is this going to cost?
• Is that covered by my insurance? 

Can We Talk Raleigh panel

I was on a panel moderated by Sa’Brina Davis, caregiver and patient advocate. Joining me on the panel were Dr. Ken Holt (primary care physician), my friend and fellow psoriatic patient, Brian Lerschall and Jennifer Pinney (patient.)

One of our primary questions was how can I get my doctor to listen to me? I’ve written another blog post on this topic in the past and feel that this is something many people could use help with. In fact, my family needed help getting specialists to listen to our concerns when my primary care physician told me the secret. Your body language must match your primary concern. If you walk in to the doctor and you say, “I’m in so much pain I can hardly move. On a scale of 1-10, my pain level is an 8,” yet you are telling jokes and goofing off, the doc might not take you seriously. If your pain level is truly an 8, you’re going to be having a bit more difficulty with your communication. It should be obvious when the doctor looks at you that you’re in a considerable amount of pain.

Dr. Holt made some really great suggestions too. He likes it when his patients come prepared with a list and start the conversation with the most important question on the list. All too often, people wait until he’s just walking out before the toss over an important question. Dr. Holt says that his schedule, like most other doctors, is packed and that it’s important for us to remember that he’s got a limited amount of time to spend with us. Make that time count! You’re responsible for ensuring that he knows everything he needs to know to make a diagnosis and provide appropriate treatment.

As the meeting progressed and the panel discussion wrapped up, we discussed other topics that I want to touch on quickly. We talked about the power of the story. We all have one, that’s for sure! Use yours to make a difference. For example, you can use it in the doctors office. Dr. Leana Wen, a doctor in Baltimore and the author of When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests says, “Don’t go into that office simply saying your chest hurts. Tell the story of it. For example:

• When it started
• If it’s been painful before
• What you were doing when your first felt it
• How it felt
• How often you feel the pain

That can really help clear things up.”

Your story can also change policy or raise awareness about an issue. These are all reasons that I choose to share my story. Even now that I’m on short term disability from work, I share my story. It’s that important. Yes, I’m in pain. I might not be able to sit in the meeting from beginning to end because of that pain, but it’s so important that I tell you what happened to me that I’m going to struggle through.

I know that most of my readers also have chronic health conditions. Many of you are already advocates for your condition, but if you’re not, I encourage you to share your story. Even if you’re not ready to stand on stage and tell your story, there are other ways you can share. Tell one person. Instead of being angry if someone asks why you’ve got a limp, use that opportunity to tell them exactly why you have that limp. Set up a meeting with your state senator. Tell your lawmakers what’s important to you and why. Get involved.

If you need help brainstorming ways that you might get involved, let me know. I’d be glad to try to help.