“Advocating for Another” Carnival 2012 – Day 2

by Heather Grace IPJ Staff Writer

Being part of the pain community means being surrounded by some really great people. We’re all unique, and yet, we’re all the same in so many ways.

1. Family. We Stick Together Like Glue

The pain community brings people together from all different backgrounds. We came to this community on so many different paths. Some had accidents, some were born with an illness, some got very ill and developed pain that way. Some of us are young and some old. And, we’re from every ethnicity. But somehow, all those divides that generally separate people don’t seem to matter. We have this instant bond that is palpable… all it takes is a 10-minute conversation with anyone who is living with pain. When so many of us have lost loved ones who misunderstand our illness, this is a huge blessing. It means the world to me to have a family of people who live close by. And a family of people worldwide that I connect with online, as well as over the phone. We have all found each other for a reason-we care about each other, and can truly count on each other. No matter what. If you’re not around for a while, they ask after you. You do the same. This is what family is, at its finest. It’s sad we had to find it this way, but it means the world on tough days!

2. Compassionate. A Very Caring Community

Because everyone who lives with pain has suffered a great deal in their lives, they become very caring. I’ve seen it time and again. Reaching out to strangers to help them is not at all uncommon for any of us. I’ve done it, like so many others have. Seeing someone else in pain causes us to hurt. We want to stop their suffering–helping them in any possible way. We’ve all shared healthcare tips, the numbers of doctors we trust and have also been a listening ear. We want to help. It’s important to repay the kindness that was shown to us at the most difficult times in our lives. Somehow, we’ve all had someone who did that for us. And you realize: it’s a powerful thing to share a simple kindness with someone who’s hurting.

One day, in the waiting room of my doctor’s office, I decided to kill some time. I called the Work Comp office, asking if my spine surgery would be approved. The person on the other end of the phone simply said, “Not yet” and hung up. It had been over 4 years since the MRI showed a disc at the base of my neck pressing against my spinal cord! It was too much for me, and I began to cry. A stranger sitting next to me reached out. He fumbled in his pocket, then handed me a tissue. He looked about 20. That simple kindness was shocking to me after all I’d been through. After a moment, he said, “Tough day, huh? I’ve had them too. This place will kill you if you let it.” Before long, nearly everyone in the waiting room was talking about their experiences. We were sharing war wounds and supporting each other. Months later, I realized being kind, supportive and caring was a unique side-effect of serious pain. I’ve seen countless random acts of kindness ever since, and I have become more and more giving over time. It seems counter-intuitive, but that’s why I love this community. Always surprising people!

3. Strong. Mentally Tough Despite Physical Challenges

Wonder Woman! I know it sounds like an oxymoron. People suffering through chronic or intractable pain are tough? Yes, it’s true. Determined. Hardworking. Fighters. No matter how tough the person with pain may have been before they were in pain, they’re stronger for going through it. For a long time, I felt like I couldn’t take it. The pain felt like it was too much to bear, and it was getting worse and worse. I actively considered suicide, and had two near-misses. But, when I chose to LIVE, I became mentally strong. I would fight through the pain, I would find the right treatment, I would get through it. Somehow. Any darn way I had to. Lots of us struggle, and it’s the choice to fight that gets us through. Once we find a way to approach pain that works for us, I believe there’s nothing we can’t do! Of course, finding the right treatment to best management our pain makes a big difference, too. Having a doctor who believed me helped me get my strength back faster than ever. No matter how we find it, everyone who lives with pain is mentally tough. They live through the pit of hell over and over, and come out of it anew. They’re truly the toughest people I know!

4. Really Strong. Despite Misunderstanding & Stereotypes That Hurt

I know. I said this already. But, it warrants repeating. How many people with a serious (and often life-threatening) illness have to also suffer the slings and arrows of the media constantly? How many people who are ill and already in pain have to face whispers, and even sometimes face-to-face accusations from people they know and care about? Being a person with pain can really suck sometimes. You know you’re sick. But most of the world seems to think you’re not. It’s an insanity that is almost unbelievable!

We aren’t addicts. We aren’t crazy. We aren’t freaks. We’re just people who happen to be in pain. No other illness means having a hard time finding and sustaining appropriate treatment because of what the treatment often entails. No other illness means proving yourself over and over again. And yet, we all do. We are survivors. Some days because we have to be, but most days? It’s because we’re strong.

5. Fearlessness. Bravery Like I’ve Never Seen Before

People with pain have this unique tendency to become fearless! At first, it shocked me. Now, I admire every damn one of my “pain friends” for being their crazy selves! And I admire this quality most because I wish I was more fearless. I have a tendency to be very shy, especially with people I don’t know. Being part of this group has brought me out of my shell, which is wonderful. Watching everyone else be so brave has rubbed off on me, little by little. The pain community, and especially advocates, are willing to do whatever it takes, whenever it’s necessary. A group of us went to speak to the DEA, to build understanding and acceptance of our community with law enforcement. To my surprise, one of my advocate friends was perfectly willing to take pain medication in front of the people we were meeting with. Why? She wanted the DEA to understand that pain treatment is complex–just like all illnesses, there is no one-size fits all option. She happened to take more than the “ceiling” dose now being touted in Washington State and elsewhere, and wanted them to see very clearly this 100mg/day number was pulled out of the air. Her bravery–sheer fearlessness–was truly inspirational!

We with pain realize that being fearless, willing to tell everyone what it’s really like to live with this illness… That’s the only way to achieve understanding. I think it’s a beautiful quality. The person I described above is one of many who have put themselves in a public forum without worrying about ramifications. So many pain sufferers have stood up and said, “Hey! Look at me! Look at me and see I’m just like anyone else… except that I have pain.” Bold. Fearless. Brave. I admire people with pain for all these reasons, and more!

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The above blog entry is part of a week-long series created by WEGOHealth “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

* Wonder Woman image copyright owned by DC Comics.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.