Defining Your Story As a Patient Advocate

By Barby Ingle, PNN Columnist

Almost a year ago, I covered the topic of motivational speaking as a patient advocate for the pain community. A lot of the information I shared dealt with how to plan and organize for advocacy, but the messaging you use is equally important. It must be specific to the audience you’re trying to reach.

I have learned that honing and defining my story is an important aspect of being an advocate. I used to spew it all out and see what sticks, but have learned over the years that when I concentrate on a few key points specific to my audience I will be a more effective communicator.

For instance, when I spoke at a rare disease event, I focused on how rare conditions have impacted me and how more rare disease research and funding are needed. At a cancer event, I spoke about my experiences with cancer and the missing support I see in that area.

There is no specific way to advocate, but there are some basic guidelines that can help get you started. The first step is finding your own voice. You want to have your own message and share your own personal story. You don’t want to copy or act like someone else. I have told newbies, “Don’t try to be me. You be you, and I’ll be me.”

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When honing your message, start with deciding what you want to talk about. Sometimes it is important to go wide and broad when talking about chronic pain, but other times it’s important to discuss your most pressing experiences with a specific disease or challenge.

There are thousands of issues that need working on in the chronic pain world, from access to medication to finding a compassionate doctor. Defining the issue that’s important to you is key. You must be able to explain your point of view and back it up with data and science that is relevant and recent.

Keep it simple. Think of 2 or 3 takeaways for your audience. What should the listener walk away knowing when you are done?  In many cases, such as testifying at a legislative hearing, you’re only going to get 2 or 3 minutes to speak. Respect the time limit and practice beforehand so that you can explain and emphasize your takeaways. Leave a few moments for follow up questions.

Remember, you are not sharing your message to prove someone else is wrong or to undermine them. You are there to share your story and the challenges that affect your daily living. I do a lot of reality television, and producers always remind me to only talk about what I want to bring attention to. If I talk about someone else’s message, it takes away from my own. Tell them who you are, how you are affected by a policy, and what can be done to solve it.  

Your personal story should be about you and what you have gone through. If you’re a caregiver whose spouse was put through step therapy and had delays in getting proper medication, how did that affect you?  What did that delay in care do to you? Why do you care about this cause? Let the audience know why you care.

Next, give them the takeaways. There should always be “an ask.”  What do you want your audience to do for you?  A state legislator may be voting on a specific bill that you want them to support or vote against. Or tell your audience how they can help spread awareness and advocacy.

Keeping the requested action positive is important and keeps it moving in society. You could ask other patients to discuss an issue with their friends or to be sure to vote. You can ask for just about anything, but be as specific as possible. If you are asking for others to make a change or believe in something you advocate, then you must show some expertise on the topic.

Understand that some words are trigger words that should be avoided. Instead of talking about how hard it is to get “opioids” or “narcotics,” say patients need better access to “pain medication.” They are all descriptors of the same thing, but have very different meanings and connotations.

It takes a lot of courage to share health topics and challenges we’ve been through. Many advocates, including myself, are ridiculed and shamed. PNN had a great column on this last month, “Stop Shaming Pain by Mia Maysack. As Mia explained, you may encounter negativity even within our own pain community.

Your story should take others on the journey you’ve been on. Think about how you want your audience to feel and what your end goal for them will be. Being yourself, being vulnerable, and sharing your story are powerful ways to engage the public and create change.

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Hidden Costs of Patient Advocacy

By Barby Ingle, PNN Columnist

I have been advocating for chronic pain patients and the pain community since 2006. I started advocating because my chronic pain journey was long and hard, yet my story was by no means original. What happened to me was happening to far too many others. We were being ignored by the medical system and had lost our voices. 

I decided that it was time to get my voice back. 

I first started advocating for myself with my own providers, then started going to doctor’s appointments with other patients, followed by peer-to-peer mentoring of other patients and attending health events. Within a few years I was being asked to be the patient representative at many conferences. 

I didn’t start using social media until 2009. Doing so opened up a whole new set of ways to advocate. I began connecting with people all over the United States and the world. In 2010, I was invited to testify at a Defense Department hearing in Washington, DC and also at the Arizona legislature. 

I had patients attack me on social media for not being sick enough. Well, they haven’t seen me at my worst! What they saw was the branding and marketing image of me, which puts an emphasis on positivity. 

I recently watched an argument on social media over how much advocacy costs. There were two sides to the argument. On one side were those who think advocacy should be free and that it costs nothing. The other side was saying that money is needed to fund advocacy work and that people should donate to pain organizations who do it for them. 

If you asked me during my first 5 years of advocacy, I would have said it is free to be an advocate. But over the past 7 years I’ve learned that there are many hidden costs outside of the time you volunteer. 

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As an advocate who makes phone calls, your monthly phone bill would be a minimum of $25 for each phone line per month, plus another $20 for unlimited long distance. For online advocacy, internet service fees would be about $45 monthly. That’s not counting the cost of a computer, printer, telephone, office space, supplies, newsletters, etc.

Whether you are going for in-person advocacy or mailing letters, you need to take the time to research the issues and work on prep materials. That may take 10 to 20 hours per issue. If you are lucky enough to be paid for your time ($15/hour is the proposed national minimum wage), that would be a minimum salary of $150. 

Traveling to your state capital could cost a tank of gas, plus your time. That is not much. But to go to meetings in Washington, DC – as dozens of advocates recently did to attend an FDA hearing -- you will need to pay for your flight, hotel, meals and ground transportation.  

When someone like myself is paying for most of these costs privately, it adds up to tens of thousands of dollars a year. Can you do it for less? Yes, but then you are getting less out of your advocacy work and it is going to be harder to make a difference. 

We do need individual patients to write letters, make phone calls and call for change. But to say that there is no cost involved is really not accurate at all. There are many other costs, like writing social media content, pamphlets, resource materials, business cards, etc. that should be taken into consideration.

Just recently Don't Punish Pain rallies were held across the country. The campaign is said to have begun with one woman and a stack of index cards, but that doesn’t factor in all the other costs of signs, banners, telephone calls, and posting on social media, or the hundreds of people who volunteered their time to organize and attend the rallies. 

Advocacy costs at all levels. Recently I heard from a patient who was on workers compensation, who lost her provider and medical care because she was so involved in advocacy they thought she had a job. 

There are millions of dollars involved in advocacy and the work takes time, effort, heart and care. Please know that I am glad for all advocates and the help that comes from any efforts they make. We are not thanked a lot. 

I send out big thank you notes to everyone who has sent an email, made a phone call, testified in person, attended a doctor’s appointment with another patient, and made a difference for even one other person. Whether you are paid for your advocacy work or not, it has value and it does at minimum cost us energy pennies! 

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How to Advocate for 'Generation P'

By Barby Ingle, Columnist

There is so much talk about Generation X, Y and now Z, it got me thinking about what generation I belong to. There are psychological, cultural and sociological dimensions to identifying with a generation.

I decided that I am with Generation P -- the “P” standing for chronic pain. Typically, a generation is defined by being born during a specific time period, but pain affects all ages without discrimination. Therefore, you belong to Generation P if you are living with daily pain, no matter what your age.

What does it mean to be part of Generation P? When you become a chronic pain patient, you begin to be left behind by your old generation and become part of a new generation where the main theme is survival. We have to focus on recreating a new life, instead of living the one we had. Our attitudes and important factors in life are reevaluated and change. We need to learn how to navigate through the healthcare system, understanding that there are not many who are treated properly when it comes to pain care.

Being a successful contributor to Generation P starts with self-advocacy. If we don’t stand up for ourselves, things won’t get better. We must learn how to change policy, change laws, change the service system we have access to, and change public attitudes.

I have seen many people with chronic pain fight for their right to fully participate in all aspects of life, despite their disabilities. I have had to do this myself. This is where our awakening begins.

We must learn to put in great effort and use our energy pennies wisely to get the care that we need. We use problem solving to get through our days, and once we learn to do that effectively, we can begin to advocate for others having similar troubles. We must work to improve pain care, protect rights and stop discrimination. We must stop abusive treatment and make pain care more fair, equal and humane. We can do this by removing barriers that prevent access to pain care, so we can better participate in society and have our voice heard.

We must be sensitive and understanding to others who are trying to overcome the challenges of living with chronic pain. We need to be persistent in our search for good care and determined that our efforts will make progress despite setbacks.  

Advocates should listen and be objective. This is the most effective way to get the care we need. We must recognize our own prejudices and tendencies. We shouldn’t second guess or judge what someone else’s pain experience is. We need to trust their judgement. If something works for them but not us, that’s okay because we will continue the search to find what works for us.

How effective we are depends on how we handle our situations and challenges. We must constantly reevaluate our situations and attitude. We must be polite but firm. We must learn to work with others without controlling them. We must also pay attention to privacy and confidentiality for others so we can maintain credibility.

When it comes to advocacy, we recognize that there are millions of ways to do it, but that we all have the same hope and that when we use our voice for good we not only help Generation P, but also those who are Generation X, Y, and Z. One day they too will become members of Generation P.

Generation P is the now of pain care. It is up to us to create social change, carve a path for better and timely pain care, and increase awareness about chronic pain.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.