By Barby Ingle, Columnist
2016 is turning into the year of the patient advocate. It’s been great to see pain sufferers who’ve been quietly supporting our advocacy work for years finally start speaking up for themselves. I think the CDC opioid guidelines and having so many doctors change their practices have caused this surge.
We need to be heard, but I am also seeing people still trying to convince the CDC that we are suffering and that we are not drug seekers. It reminds me of the quote by Dale Carnegie: “Those convinced against their will are of the same opinion still.”
Being in advocacy meetings and testifying at the federal and state level on a multitude of pain challenges and policies, I have learned that there is a better way to approach this. I have gone to legislative meetings where minds were made up before we even testified. They gave us our 2 to 5 minutes to speak and then went ahead with the decision they were set to go with before the meeting started.
Having done over 300 media interviews, I can also say even in a live interview this is what you can expect. The reporters and producers have a set script and set agenda before you arrive. They have the questions and graphics set in advance. If you think you will be able to tell your side and convince someone to change their mind in a public setting, think again.
Here is a parallel example. If you walk into a sandwich shop owned by a grilled cheese sandwich maker and the shop is called Sammy’s Best Grilled Cheese, don’t expect to find a beef brisket dinner on the menu.
Yelling at the owner (who advertised properly what you will get there) or complaining on social media will only bring Sammy’s free advertising. They are not going to change their menu. They know that will not make everyone happy, but it is their shop.
You want a beef brisket dinner? Find a different restaurant or make your own. And if you make your own, don’t expect the grilled cheese fans to come.
In the case of TV, after doing a few shows myself, I know the producers are not looking to see if people liked the show or not, they are looking to see if people react. Yelling or writing mean letters, emails, and social media posts is only giving them ratings and marketing for free. It promotes their agenda and message even more. It’s exactly what they want.
They already know that there are more chronic pain patients than addicts, that patients have limited access to proper and timely care, and that the sponsors of the program are paying them. And they will cut you off the more you fight.
How can we be heard? When it comes to legislation, we need to work to get into committee meetings before the big public hearings. Legislators need guidance before the hearings happen. Share social media posts, call the legislators’ offices and send letters before the hearing. Show up at press conferences for the bills that we support.
It is very difficult to change a legislator’s mind at a public hearing. We have to get them before the hearings. Once we get on the inside, then we can get placed on advisory committees and work strategically towards making changes. This is something that will take time to do, but it is the most effective way to make meaningful, lasting change.
When it comes to media, we need to place our own stories and not react to every story or segment that has already aired. They can’t go back, it is done and it is out there. Commenting on them is okay, but it is not going to get our voices heard for meaningful change. Who are you trying to convince at that point? If the show or story doesn’t promote what you want, why keep pushing it through social media?
The person or media group that put it out is happy to see the reaction to their piece. Most readers do not even go through and read what you write, and others will see 207 comments and skip through them. Why not give them no comments and no attention if it goes against what you believe? Instead write your own blog, media article, or TV station about airing a segment on chronic pain and the area of interest you want covered, the way you want it covered.
If you want a beef brisket, go to where you can get one, don’t spend time going to Sammy’s, where you know it is not sold. Going after the chef and demanding he offer a different choice is not going to happen. It has only given us Soup Nazis like the CDC: “No soup for you!”
We need to create our own recipes. Give them well-thought answers with research to back it up. We know that the studies the CDC used were poorly done, so maybe start with presenting better research. There isn’t any? Then we need to create our own research studies, surveys and needs assessments.
The same concept can be applied to finding the right healthcare provider. If you read their website and they don’t offer the treatment you would like to try, find one who does. You will have a better chance of being heard, bettering the pain community, and making a difference that can be lasting and effective.
The solution is going to take time. It will mean electing people to public office who understand what we are going through, who are pain patients themselves or a caregiver who gets it. It is going to take patients voting and speaking out at the right place and time. Speaking up after a decision is made is not helping. It is making us look like seekers and addicts.
Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) 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.