Congressional Letter Builder

Welcome to the Congressional Letter Builder Survey –  from “Your Voice Matters: make chronic pain visible” 2020

Here’s a good idea to help us write the letters we want to write our legislators. It leads you through a series of statements about your pain and its treatment (or lack thereof) and you can use their 5 choices of “Strongly Agree” to “Strongly Disagree”, sand/or you can write about your thoughts or experiences in the text box below each statement.

We’re so glad you’re here! You are affecting policy decisions and influencing new areas of research. Your voice matters! Your responses will be combined with others and delivered to legislators.  Submissions will be delivered on bi-monthly intervals.

To be effective, we estimate that 10,000 responses will be representative of how chronic pain affects people’s lives in the United States. Together we make a difference!  

Your address is needed by congressional offices to verify you as a constituent.

Here’s what I answered:

  • You experience(d) hurdles in achieving a chronic pain condition diagnosis.

Because the cause of my pain was not visible, and all my scans and blood tests were normal, few doctors would believe me about how severe it was. I researched my own condition for years until I found the correct diagnosis (Ehlers-Danlos) and had it formally verified by a geneticist.

  • You have a hard time getting through your day because pain stops you.

Because I have a genetic connective tissue disorder (Ehlers-Danlos Syndrome), physical movements cause pain as well as being too still for too long, which allows tissues and joints to “sag” into dislocated positions.

  • You are unable to participate in family or social activities due to your chronic pain illness.

I cannot do activities with a group because my individual limitations require special handling (need specific seating, need rest breaks, cannot drive in a normal car seat, etc).

  • Chronic pain limits the activities you love most.

I have had to give up my lifelong pursuit of endurance sports: running, bike riding, and horseback riding. I can no longer go camping, enjoy long road trips, or go on outdoor expeditions.

Also, I had to give up my high tech career with all its potential. My brain can no longer focus and concentrate well because of the constant interruptions from pain signals.

  • You can get appropriate medications or treatments for pain relief.

I suffered through several doctors who denied my pain, but I eventually found a doctor willing to prescribe the needed opioids for pain control in addition to all the other non-opioid medications I use for pain.

  • Access to appropriate medications or treatments for pain relief has become more restricted over time.

I have never abused or misused my opioids in any way, yet I was suddenly forced to sign a completely one-sided pain management contract and forced to take drug tests.

  • Stigmatization is an obstacle in your access to appropriate pain care.

Stigmatization is a problem with family and friends who can’t understand that I’m not “getting high” from my pain medication.

  • Recent policy regulations are an obstacle in your access to appropriate pain care.

If the CDC “recommendations” are turned into “policy” and “rules”, my opioids will be decreased to the point I can no longer function.

  • You are avoiding medical appointments due to expense.

I am now receiving SSDI, but medical costs are rising far faster than my income so I have to ration my medical care.

  • You have disclosed your full diagnosis or experience with your chronic pain illness with those around you.

Yes, I am a pain patient advocate.

  • You feel that you have to defend your actions in seeking pain relief.

Absolutely, because I am still accused of being an addict by some friends and family.

  • You are unable to work productively or to the level you’d like.

I had to stop working due to my pain in 2008, but I kept trying to go back to it for 4 more years before I finally gave up and filed for disability.

  • Your chronic pain illness has affected your education or career goals.

I lost my career due to pain and gave up all the financial and social benefits of working with really smart people in the high tech industry.

  • You are having anxiety or feeling depressed about what your future holds with a chronic pain condition.

My genetic disorder of EDS has been discovered to also affect mood, making me even more vulnerable to anxiety and depression.

Despite medication, I still spend about 70% of my life in a depressed state and about 10% in suicidal ideation. I don’t see a future for myself because I can no longer “fend for myself” in this brutal Darwinian society.

My future will be determined, not by me, but by my increasing disability and need for assistance: financial, medical, and personal. 

  • You have experienced suicidal thoughts from fear or exhaustion in dealing with constant pain.

Suicidal thoughts have been a constant in my life since the debate over opioid prescriptions has become so prejudiced against pain patients.

With EDS, I fear living to an excruciatingly painful old age with my pain and body breakdown guaranteed to continue worsening, as it has been for my poor mother.

These days, there seems little hope of getting additional opioid medication to deal with increasing pain. Instead of logically understanding that all painful body breakdowns are accelerated by aging, doctors assume that any request for higher doses means I’m just drug-seeking.

I dread reaching a point when my pain becomes overwhelming and euthanizing myself becomes my best option. A life in bed or on the couch, crippled by pain that doesn’t go away entirely even while lying down, is not worth living.

Do you hold back asking for the help you need? If so, how?

Sometimes I do and sometimes I don’t. It always depends on the situation and the person. While I try to do most things by myself, I’ve been scolded by my husband for not asking for help and then hurting myself.

  • Have you ever felt your doctor thought you were being a drug seeker? If so, how?

I didn’t just “feel” this, a doctor specifically accused me of it when I requested a prescription a week early because I was about to leave for a 2-week vacation.

She just snarled at me, “I know exactly what’s going on here!”

Well, she clearly did NOT know what was going on even though she was so sure she’d discovered my “real motive” for asking for an opioid prescription. I immediately went back to my PCP and never saw this doctor again.

  • Feel free to share anything else about your experiences with a chronic pain illness.

Other thoughts?

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