Your Voice Matters – Make Chronic Pain Visible
WHY WOULD TELLING MY STORY AND SENDING A LETTER MAKE A DIFFERENCE?
The National Fibromyalgia & Chronic Pain Association and pain patient organizations were recently asked to reach out to people with pain and their families directly to ask about their experiences.
People making decisions that significantly affect your quality of life (federal officials, legislators and policy makers) need to know if you are receiving adequate pain management and relief.
Telling your story can affect their policy decisions and new areas of research.
There are three ways to tell your story:
(1) upload a personal letter on this website,
(2) answer questions that will automatically create a letter, or
(3) participate in an anonymous survey
Legislators ask “how does this affect my constituents?” Your address is needed by congressional offices to verify you as their consituent. Being as open as possible in your letter to your legislator will help them understand the impact of living with a chronic pain illnesses.
Your letters will be combined with others and hand-delivered to legislators on bi-monthly intervals.
To be effective, we estimate that 10,000 responses are needed to be representative of how chronic pain affects people’s lives in the United States
Please ask others you know to help in this major initiative.
Does chronic pain illness affect your life on a daily, weekly or monthly basis? If so, how? Below are things to consider when telling your story.
- Are you having a hard time getting through your day because pain stops you? If so, how?
- Are you unable to work productively or to the level you’d like? If so, how?
- Are you avoiding medical appointments due to expense? If so, how?
- Can you get appropriate medications or treatments for pain relief? Has that access changed over time? If so, how?
- What obstacles prevent you from finding appropriate access to pain care, if any?
- Have you disclosed your full diagnosis or experience with your chronic pain illness with those around you? If so, who (friends, family, co-workers, boss, etc.)? If not, why?
- Has your chronic pain illness affected your ability to work or your productivity? If so, how?
- Has your chronic pain illness affected your education or career goals? If so, how?
- Does chronic pain limit the activities you love most? If so, how?
- Are you unable to participate in family or social activities? If so, how?
- Are you hiding anxiety or feeling depressed about what the future holds with a chronic pain condition? If so, how?
- Are you experiencing suicidal thoughts from fear or exhaustion in dealing with constant pain? If so, how?
- Are you feeling that you have to defend your actions in seeking pain relief? If so, how?
- What led you to seek a diagnosis, and what led a clinician to diagnose you? Were there any hurdles in achieving a diagnosis? If so, what?