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 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.