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.

Stop Shaming Pain

By Mia Maysack, PNN Columnist

I've encountered and witnessed shaming several times in the pain community. It’s as if there was a contest to compare one pain to another.

I once shared a personal experience online about a specific treatment option and got ripped apart by people who disagreed.

Then came a debate pertaining to how to properly label my specific head pain. Due to the fact I have cluster headaches, yet also live in a constant state of migraine, I've used the term “migraine clusters.” That caused offense and was deemed incorrect. No one debating me came up with a proper label for my never-ending pain, so I'm still trying to figure that one out.

There are also questionable looks and inquiries about my health, because I don't have a wheelchair, visible cast or a gushing wound.

I've also encountered others describing their ailments, only to cut themselves off by saying, “Oh, but it's nothing like what you endure!"

Our experiences don’t have to be the same for them to be valid. That's a mind frame the world as a whole could do well to adopt.

There have been times I've partied in my own pity for far too long, but I've since learned that serves no positive or productive purpose past a certain point. Visit those feelings and then send them on their way. Don't allow them to unpack and live in your brain. I'm not preaching, this is just as much a reminder to myself as anyone else.

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We as human beings have all been through something that has changed us. A large portion of my life has been dedicated to the medical field. Nothing gave me a rush quite like having a full floor of patients that were well taken care of.  I used my career for a long time as a means of distraction from my own pain, because how couldn’t one get over themselves while constantly surrounded by people who have it much worse than you?

Newsflash to us all:  Whether in a hospital or walking around a park, there’s no possible way to know what someone is going through, feeling or what their circumstances have been up until the point your paths might cross.

We are all faced with hardships, some more than others, but pain is pain. Each individual is at a different place in their journey and each personal experience is unique.  This is a remarkable thing, because it provides a golden opportunity for us to learn from one another -- as opposed to having a ridiculous and unnecessary divide as we cater to the “I am offended” epidemic our world seems to be inching closer to by the day.

As an advocate and a person, my intent is never to cause insult. However, I am also not afraid to use my voice in an effort to get important conversations started. 

Having a difference of opinion is acceptable, but disrespect or tearing one another down is absolutely not.  Could we all at least agree that there's enough suffering already happening in our lives? Why contribute to it with each other? 

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

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.

Be the Best You

By Barby Ingle, Columnist

Recently Melania Trump unveiled her "Be Best” campaign, which focuses on the well-being of children, their use of social media, and preventing opioid abuse and bullying. The First Lady wants to promote healthy living, kindness and respect so that children are better prepared physically and emotionally to face the challenges of tomorrow.

“It remains our generation’s moral imperative to take responsibility and help our children manage the many issues they are facing today, including encouraging positive social, emotional, and physical habits,” she said.

Those are admirable goals. But I strongly believe that we need to make tomorrow the best it can be for everyone – including the pain community. The same challenges the First Lady sees for children are faced by everyone who is living in pain, disabled or is a caregiver for someone in pain.

Since 2012, I have been losing too many friends to suicide who are not being adequately treated or who don’t have access to proper and timely care. Instead of society stepping up and helping, I have seen the bullies (in our community and in the general public) berate and beat down people in pain who want to live, thrive and succeed despite the challenges they face. Pain patients are committing or attempting suicide at an alarming rate.

We can make a difference if we use our voices to encourage positive social, emotional and physical well-being. By living with purpose and exuding positive attitudes, pain patients will be better equipped to deal with the physical and emotional challenges we face.

In recent years, I have been happy to see many pain patients and caregivers use their voices to speak out and work to create the change we need. We have begun to see our stories and efforts get some attention in the local and national media.

Although we are just scratching the surface, we are making change happen. We have to continue creating that change with hope, resilience and strength more than ever.

I get many calls and emails from patients who have been poorly treated in their search for pain care, threatened on social media, and criticized for trying to show the plight of pain sufferers and their lack of access to effective treatment.

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I have seen firsthand how this lack of compassion has affected both pain patients and addicts, who together make up more than a third of our society. Some addicts are stepping up and saying what is happening to pain patients because of sweeping measures to prevent opioid abuse is not right, compassionate or ethical. 

I hope that the efforts of both the pain and addiction communities will show the administration and Congress that we need to work on both the pain epidemic and the lack of access to proper and timely pain care.  I hope you will join in these efforts in your own way. It shouldn’t matter where we live, how rich or poor we are, or what our health is like. We should have less stigma and more compassion for the suffering. 

Ordinary people can do extraordinary things. Let’s make it our mission to have our own “Be Best” campaign. This doesn’t mean being perfect or making change in one day. It means recognizing areas where change is needed and coming up with solutions. A place to start is understanding and sharing core beliefs that we can agree on. There are four beliefs as a pain patient that I subscribe to:

  1. Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions. 
  2. Effective pain care requires access to a range of treatment options, many of which are currently being denied. 
  3. Chronic pain is an unrecognized public health crisis with devastating personal and economic impact.
  4. Allowing people to suffer with unmanaged pain is immoral and unethical. 

These goals were agreed on two years ago by over 70 healthcare and advocacy organizations in a letter to Congress urging it to implement the National Pain Strategy. Isn’t it time we started acting on that?

I believe that we can agree on actionable solutions that promote better well-being for all. I look forward to hearing your thoughts on tools and skills that will improve the social, emotional and physical health of pain patients. We need more than pain organizations to make these changes. We need patients, families, caregivers, providers and the public to help us solve the challenges we face as a pain community.

We have a purpose to be your best you. What is it that you can do to be your best?  

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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.

Motivational Speaking for the Pain Community

By Barby Ingle, Columnist

There are many types of patient advocates. One of my favorite is being a motivational speaker. Sharing my personal story of trials and challenges -- and how I overcame them -- is motivational to me and inspirational to those who have heard me speak at pain conferences.

I often get the comments like: How did you learn to be a motivational speaker? How can I share my story with the world?

Many pain sufferers have compelling stories of over treatment, undertreatment and mistreatment by the medical system, but they are not as focused as they need to be for motivational speaking. I'd like to share a few tips that I’ve learned.

First, you have to create a plan. You have to become the expert of your own story. And you need to develop a goal or outcome that you want your listeners to learn – an “action item” for them when your presentation ends.

After you organize your thoughts and create your presentation plan, figure out how long your talk is going to be. You could be allotted anywhere from 10 minutes to an hour to speak. I know I could go on for 8 hours straight on some topics. Do you need to save time for questions? Do you want to allow people to interrupt you during your presentation or after?

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Where do you speak? If this is totally new to you, you may want to start at your child’s school for career day. Yes, being disabled and having chronic pain is equivalent to a career. I actually wish some of the parents who were disabled or chronically ill when I was growing up would have come to my school to do a presentation. It helps plant a seed, so that if a child or their family member finds themselves in a similar situation, they can remember the lessons they learned.

Another place to speak is your church or local library. After you speak 10-20 times to smaller groups and develop a focused and polished presentation, you can turn to your local hospitals and pain clinics and see if they need a presentation from the patient’s perspective. There are also online opportunities, such as webinars put on by nonprofits, Facebook or Periscope live sessions that can help you practice and develop your public speaking skills.

As you build experience, you will sharpen your message, get better at understanding your audience, and learn what is best to skim over and what is important to present in full. Having backup material to present is also very helpful.

Be prepared for anything. I once passed out during a speech. Just fell over. How would you handle it? I had them bring me a chair and a water bottle. Now I always go on stage with a water bottle.

Finally, understand that motivational speaking is not for everyone. It takes someone who is organized and willing to share the messy details of their life with actionable goals on how to turn it around. As my friend Judy Carter says, “You can’t have a message without a mess.”

It takes work. I practiced speaking with my dad and husband, tape recording myself to see how many “um's” and “like, you know” I was saying and how to cut them out. The secret is practice and preparation.

The breakdown of steps for me goes like this:

  1. Write down your topic, facts, personal story and the “take away” for listeners
  2. Practice by yourself
  3. Practice in front of someone
  4. Put yourself out to the world as a potential speaker
  5. Stay within your allotted time -- which requires you to be focused and practiced
  6. Allow time for questions at the end. If no one has any, have a recap message ready so you can end on a positive and productive note.

Keep in mind that you are a pain patient and sometimes you have to prepare by resting – both before and after your talk. The endorphins I get when on stage are a pain reliever for me, but when they wear off I hit the bed and need a few days of recovery. Be ready for this to happen to you.

It’s more important than ever for pain sufferers to share their stories. We are poorly understood and often ignored when decisions are made about our healthcare. We need to be our own best advocates – whether it’s testifying at a legislative hearing, participating in a pain support group, or speaking at your child’s school.

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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 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

5 Steps to Successful Advocacy for Pain Community

By Barby Ingle, Columnist

When it comes to advocating for the pain community, there are many roles to fill and many ways to go about doing it. There are patient advocates, legislative activists, social media activists and self-advocates.

I do a little of each and see that the most common mistake in activism is when patients join an organization without fully understanding the legislative process, how long it takes, and that there’s no guarantee that the desired outcome will be reached.

This is a topic I have seen on many of the upcoming pain conference agendas for 2018. I have been asked to speak at a conference about it, and while preparing my talk I realized that patients need more information on what it takes to build a pain organization into a successful change maker in public policy and legislation.

There is a 5-step process that I use to insure that a message is heard, supported, and goes from being an idea to actual legislation at the federal or state level. It takes a never-give-up attitude, with a big influx of time, effort, follow-up and social media support.

First, when crafting legislation to improve patient care or some other goal, you need to start by creating an implementation plan. This plan should outline a budget, strategies, leadership responsibility and timelines for goals to be met.

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Second, the team leader must clarify the roles of the advocacy team and communicate that role to the rest of the leadership team, staff and volunteers. There are many personalities and challenges that will come up, so having the right people in place working together is very important.

Third, confirm that all team leaders express support for the initiative in meetings with legislators and their staffs. Allow additional time for the implementation of each step. Things tend to take longer than they should when working with teams and with government officials. The leadership should organize volunteers, create training resources, reach out to the media (and have patient stories ready for them), and provide effective speakers for hearings and press conferences. Be sure to include healthcare professionals and patients on your team.

Fourth, monitor the progress of the legislation closely. There are usually a lot of “hurry up and wait” situations and it could take years before a bill gets out of committee or comes up for a vote.  Sometimes mid-course corrections and negotiations are needed with legislators to gain their support and to keep a bill from dying, especially if a mandate or money is involved. 

Fifth and finally, carry out your strategies to achieve your goals. Your leadership team and volunteers should understand the bill and the legislative process, and be using marketing and social media tools to gain public support and awareness about why the legislation is needed. Staying motivated is critical to success. Keep your staff and volunteers involved and committed to making a difference in their own lives and the lives of others.

If you are a chronic pain patient and want to get involved, understand that this type of work takes physical action, but it doesn’t have to be all encompassing. Volunteer with advocacy groups or non-profits that are already working on legislative issues that interest you. See what fits you and volunteer to be a team leader or social media supporter. Share your story and why the bill is important to you, or even testify in person at a legislative hearing.

Be the change agent that we all need in getting proper and timely healthcare for the chronically ill.

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Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) 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.

What Is Patient Advocacy?

By Barby Ingle, Columnist

In the last few years there has been a boom in people wanting to be patient advocates. Not the paid positions that are filled by someone who works for a hospital or medical provider, but those actually affected by chronic pain – patients and caregivers -- who freely volunteer their time, energy, and efforts to help the pain community.

Patient advocates work to support a cause or public policy to improve patient care and better our community. They write to legislators, testify on behalf of pain patients, share social media posts, encourage research, speak up publicly, and talk about bettering the pain community.

Other names we could be called are patient champions, supporters, backers, proponents, spokespersons, campaigners, fighters, and crusaders.

There is a lot of chatter in the pain community about what patient advocates should be doing, so I thought it would be good to point out some things an advocate should not do.

An advocate does not get involved for their own sake. Hopefully, their advocacy helps their own pain care, but that should not be the main goal of their actions.

Advocates should not take on the role to “get even” with someone, whether it’s a doctor, hospital, politician or another advocate. Far too often people get mad because they can’t get the care they need and speak up only to get back at whoever they think wronged them. Being a patient advocate should not be at the expense of others or to seek power and influence.

There are many types of advocacy, but what will ensure success and make a difference is to avoid the pitfalls of advocacy. If you are mentoring others, be sure to have strict confidentiality as health topics are a very sensitive subject. Refrain from abusive conduct, even if the people you are assisting are abusive. Remove yourself if that becomes the case.

Some people just don’t want the help or advocacy you offer. It could be a cultural conflict, mental issue, or just that you don’t gel with them for a variety of reasons. Be okay with that, let it go and help those who actually want your help.

You should be trustworthy and honest in all the actions you take. An advocate is willing to disclose all personal conflicts of interest to those they are advocating for and with, so that any perceived or actual biases are known. We should not ever compromise our personal beliefs while advocating for others.

Advocacy is not creating more conflict or strife. A good patient advocate is going to work to solve problems, not create new ones. Advocates should not try to change what is working, but instead should work to stop unfair practices, abuse, and the under/over treatment of patients. We need to increase treatment options, services, and proper and timely care.

When we remove those barriers, advocates increase society’s ability to offer full opportunities for pain sufferers.

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.