The Importance of the Chronic Pain In America Survey
When I became chronic, I found an amazing migraine community. But it is only over the past few years I’ve realized that I’m also a member of the broader chronic pain community. No matter what your health condition or co-morbidities, you can put your pain to use by completing the first Chronic Pain In America Survey. Health Union has partnered with the U.S. Pain Foundation to conduct this survey to better understand how people with chronic health conditions experience pain, how they navigate healthcare systems, and their experiences managing and treating chronic pain.
I’ve been active with the U.S. Pain Foundation as their Migraine Advocacy Liaison. I’ve had the meaningful pleasure of working on eight editions of the INvisible Project magazine; taking the lead on three migraine, headache and cluster editions; and a RetreatMigraine special edition. Working on the cannabis, osteoarthritis/chronic low back pain and pediatric editions has expanded my knowledge of other disease areas. By telling the journeys of so many others, I realized how my migraine pain story is connected with theirs.
My dad’s chronic pain
My Dad had his right shoulder replaced with no problems, but after having his left shoulder replaced, he did not recover as quickly. Pain radiated from his shoulder down to his fingertips, keeping him awake at night. His arm and hand would swell up and become red. The slightest touch caused him to yell in agony.
Through the U.S. Pain Foundation, I became friends with several people living with complex regional pain syndrome (CRPS), a condition that affects less than 200,000 Americans. Their advocacy work, stories and even pictures during a flare-up made me think that my Dad had CRPS.
He took my advice to see a pain doctor and after his appointment he proclaimed that “Dr. Golden” was correct in her diagnosis. I wish I wasn’t right because I knew how debilitating CRPS could be. As with all chronic conditions, he struggled to find doctors and treatment options that worked for him. I knew exactly what he was going through. He told me one day that now had a better understanding of what I deal with on a daily basis. We were able to bond over our chronic pain.
A glimpse into rheumatoid arthritis
My grandmother’s hands are gnarled from rheumatoid arthritis. It’s hard for her to open bottles or even pick up a glass. I have taken her several times for cortisone shots in her hands. I sympathized with her chronic pain, but I had the unfortunate experience of really understanding her pain for a few days.
This summer, I clumsily stabbed myself with two very long thorns from a golden barrel cactus. Within an hour, my hand was red and swollen and I couldn’t open my fist. Apparently, when I pulled the thorns out, there were microscopic thorns that remained inside the puncture wound and would work their way out of my skin in a few days/weeks. Until then, the pain in my hand would feel like rheumatoid arthritis. I had a new appreciation for what my grandmother dealt with every day.
Pain is pain
Last week, I attended my second Clusterbusters conference. I was there to learn and help out when I could. I don’t have cluster headache disease, but I have many friends who do. As I met new friends, I heard over and over again that they felt so bad for me because I have chronic, 24/7 migraine. My reaction was that I couldn’t imagine the hell of having cluster attacks. In the end, we always settled on the fact that pain is pain – no one’s pain is more important than someone else’s. Everyone’s struggle is real and deserving of empathy and support.
My chronic pain is bigger than myself
We are all different in our pain journeys, but so similar. We face the same stigma, we have stories of misdiagnosis, we struggle with relationships, we feel misunderstood, we’ve been forced to fight for adequate care or to find a provider that won’t give up on us.
I always knew I had an amazing migraine family. Now I know I also have a massive chronic pain community. So do you. Think of the possibilities of creating significant change for those living with pain when we have a larger, stronger and more unified voice.
If you want to learn more about the U.S. Pain Foundation, visit USPainFoundation.org.
The survey is now closed, but please feel free to check back for results from the pain survey!
Can you tell when a migraine attack is coming?