By Terri Lewis, PhD
Dr. Lewis has studied and written extensively about the U.S. healthcare system, which she feels fails the chronically ill. She called out the pain community recently on the National Pain Report—saying it was time to stop complaining and take action. Her story received, to her surprise, mostly positive response. Many readers asked “what can I do”. Dr. Lewis, who is a daughter and a mother of chronic pain sufferers, has some advice. We will publish it as she wrote it.
It is time to come out of the shadows;
to reset your relationship with chronic pain;
to take back your name and personhood status;
to reclaim your identities not as sick people with invisible illness but as persons who deserve and demand a seat at the healthcare decision and policy table;
to organize pain patients into a national registry;
to create state organizations and challenge existing institutions;
to arm individuals with a single unifying message across efforts;
to create educational programs that educate other consumers and their families;
to create educational programs that educate the community;
to get involved in drafting our own legislation and responding to rules that affect us;
to run our own reform candidates;
to put people on notice that there will be no decisions about persons with chronic pain that are made without people who have chronic pain at the table;
to question the validity of the status quo;
to support the efforts of those who can on behalf of those who cannot;
to assign your proxy to someone who has your back on days when it’s just too much;
to become knowledgeable about what is working and what is not working;
to regularly communicate with your local leaders;
People with chronic pain are not commodities that can be bought and sold for the benefit of providers.
You have the right to receive adequate and safe health care.
Nobody has the right to experiment on you.
If you can only do one thing, it is to come out of the shadows of invisible illness.
Make your needs known;
Collaborate in research efforts so that your needs can be identified, properly characterized and counted;
Define what matters to you.
Join a consumer network that is engaged in advocacy.
Become informed about what affects you.
Is it hard?
You bet it is.
Is it worth doing?
Can you do it?
You can do anything you want to do.
We make the change we want to see.
Nothing about us without us.