Invisible Pain

Photo by Owen Michael Grech on Unsplash

This week I took the American Chronic Pain Association (ACPA) Chronic Pain Access and Care Experiences Survey. The ACPA is using the survey to collect data from chronic pain patients to better understand their realities of accessing care, patient-clinician relationships, pain-related stigma, treatment barriers, and the unintended consequences of healthcare policies affecting pain management. 

The survey is intended for educational and journalistic purposes and may help inform future articles, advocacy efforts, and public discussion about chronic pain care in America. If you suffer from chronic pain, I encourage you to take the survey. Responses are anonymous, and we need more data from patients to help shape better research and treatments. If you do not suffer from chronic pain, but want to help, consider forwarding the survey link to someone you know who suffers from chronic pain and encourage them to complete it. I hear too many stories on community websites about frustration over access to care for pain patients, so take your chance today to speak up and be heard. If you want to prepare yourself emotionally for the subject matter covered by the survey before diving in, here’s a list of the categories of questions: 

Survey Categories: 

• Access to Care (e.g., have you been denied care by clinicians) 

• Why Access to Care is Lost (e.g., explanations for why you cannot access care) 

• Forced Tapering or Medication Discontinuation (e.g., have clinicians forced you to stop or reduce a medication without your choice) 

• Stigma and Trust (e.g., questions about your trust of the healthcare system) 

• Downstream Harms (e.g., what happened when you could not access care) 

• Functional Impact (e.g., issues with daily life activities due to pain) 

• Acute-to-Chronic Pain Transition (e.g., correlations between an incident that caused pain that ultimately became chronic) 

• Invisible Disease and Being Believed (e.g., impacts of pain that are invisible to others) 

• Diagnosis Groups (e.g., types of pain) 

• What Patients Want (e.g., what do you want to help improve your situation) 

In addition to asking questions about the categories of information above, the survey includes several open-ended questions that allow you to share more personal stories in your own voice. Below is a sample set of my answers to some of the survey topics that may be difficult to quantify but are particularly important if we are going to help change misinformed perceptionsabout patients that live with chronic pain: 

1. What do you want the ACPA to know more about your chronic pain story? 

“It took me almost 30 years to get diagnosed with Ehlers Danlos Syndrome and 47 years to get diagnosed with spondyloarthritis. It seems to me that the primary issue in my delayed diagnosis was lack of education or knowledge of clinicians that were unable to identify my symptoms correctly or refer me to the right specialists who could diagnose me. Now that I have diagnoses, I’m learning about a lot of comorbidities that impact my life, like dysautonomia, sleep apnea, etc., but it’s a struggle to navigate between all of the specialists myself and to ensure one specialist has the necessary information about my other conditions so that I am treated safely. For example, I have an eye condition named central serous retinopathy that restricts me from using steroids as a treatment option for inflammation because it could cause me to go blind. It’s a serious side effect, but each time a provider recommends steroids for treating an inflammatory flare, I must inform them about my eye condition to protect myself rather than relying on the doctors to be informed themselves. If there were a chronic pain specialist who could navigate all the related conditions and advise me on general health, that would be a huge win. At this point, it’s too overwhelming for me to have to manage all my providers on my own, and I therefore often give up on a lot of them.” 

2. Tell us about a time when you felt dismissed or stigmatized because of your pain. 

“Every day I feel unsure of myself and uncomfortable if I express my pain, need a different set up in my office, or a different chair in a social setting due to my pain. It is awkward to speak candidly about pain because others typically apologize and find an excuse to change the subject or exit the conversation. In general, those who do not suffer the same painful experience as myself do not appear comfortable discussing it, which immediately causes me to develop shame and guilt for expressing myself. Ultimately, I suffer silently or use humor as a deflection to downgrade my experience so that others do not consider me to be that guy who complains.” 

3. What do you want policymakers and journalists to know? 

“Pain changes every day and just because a person that suffers from chronic pain does not have severe pain one day, does not mean it will not be severe tomorrow or even later that same day. Chronic pain is difficult to measure and therefore people suffer in silence and often make conditions worse because of chronic shame associated with chronic pain. We need more access to federal data that can be shared among healthcare organizations and clinicians, especially about mental health related to chronic pain, and then for journalists to write about it so that our communities are more aware and understanding of chronic pain patients.” 

4. What would compassionate, responsible pain care look like to you? 

“Clinicians taking more than 15 minutes to listen to the full spectrum of issues that a chronic pain patient has, including comorbidities, and helping us isolate the primary cause of pain. I’ve had too many specialists say they can’t address something that is related to my pain because it doesn’t fall within their specialty (e.g. a rheumatologist refusing to answer questions about how my EDS symptoms create confusion about the best treatment approach because I can’t identify the root cause of the pain, either EDS or spondyloarthritis). I also have specialists that have such poor communication systems that I cannot reach them for months when I’m waiting for them to fill out a simple pre-authorization form so that I can obtain a much-needed medication. Listening and communicating are the most basic starting points for a compassionate provider.” 

Although it may cause some additional pain to sit still for a few minutes and think through some answers, or some emotional pain to evaluate your personal history, if you suffer from chronic pain, I ask that you honor yourself and other patients by filling out the ACPA’s survey to help build data sets for better research and advocacy for us all. And if you’re simply an interested reader, share this post with others you know that experience chronic pain to encourage them to contribute their information and make their voices heard. Let’s make invisible pain, visible, and use the data to improve all of our lives.

Copyright 2026 David Lister. All Rights Reserved.