1. a group of people living in the same place or having a particular characteristic in common.
2. a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals. “the sense of community that organized religion can provide”
The religious can visit a church to find a community, but where can pain patients go?
You can find pain patient patients in every city and state in this country, as well as all over the world. And yet, we have been unable to form a sustainable community. Marijuana advocates did it. Gay and Jewish people did it. Pain patients? Not so much. (Not that we haven’t tried.)
Communities can share information, educate, point out and warn others of the dangers within our community, and also spread the good news. Without a community, pain patients will continue to be isolated and afraid. Without advocates fighting for our rights, we continue to lose them.
I am only one person trying to build some kind of community for pain patients. I’ve tried communities for one of my specific illnesses, TMJ. That organization no longer exists. I’ve tried communities for intractable and chronic pain patients, along with seeking chronic pain patients in the medical cannabis community.
I can’t tell ya’ll how sad it is to find all of the other blogs from pain patients on the internet, many of which are now inactive. Believe me, as a pain patient, I completely understand why this has happened. I sympathize and empathize. And it’s not like pain blogs are the only kind that have become inactive — many cooking blogs are dead too.
I’ve spent time reading about successful nonviolent revolutions, thinking a macro look might give me some clues on how to build our community I’ve reached out to other communities, asking for pain patients to be included. I’ve watched websites, like AlterNet, become popular… and then, not so much. When you think of the number of people in the internet community, you can see the problem of trying to unify one certain group. The internet was supposed to make communication easier, bring us all together, into one worldwide community. I dunno, maybe it’s not working anymore…
No doubt other pain patients have made similar efforts, only to fail time and time again. It is discouraging, if not downright disheartening. It would be great if I had a solution, but I don’t. I’ve decided: I can’t fix that.
Perhaps I should make a new category for my site, entitled “Sad But True.”
3 thoughts on “I can’t fix that”
That’s odd. 😦 well a lot of pain patients are too sick maybe? so sorry…
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I have seen this too and I don’t understand it. There are a damn lot of us. I keep thinking, “there are more of us than them.” We have power in numbers, but the only thing I see is people who vent that they are outraged or upset or distraught, or those who write out their story and explain the horror in order to educate someone, maybe someone, somewhere..and also to vent..but I don’t see a lot of people banding together for support or otherwise. It breaks my heart. All I can say is, I just found your blog and I read it every day! So please don’t take it down.
I’m sure some are scared, as no matter what we do, we seem to end up getting screwed. Maybe people are afraid. Or too much pain to be in a support group, or need to save what little energy they have. I don’t know. But I know I’m reading and I’ll happily get involved.
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Thanks so much for your comment — it sure helps to know that I’m not alone.
When I was on prescription medications and addicted to the medical industry, my fear kept me silent. I assume those who still have access to their medications of choice feel the same way. No one wants to rock the boat and have their options taken away from them. Pain patients are willing to sign contracts (which hinder their ability to change doctors and use other pharmacies), pee in a cup, have surprise pill counts, and have their names registered with the federal government — basically, be treated like a criminal — all to protect their access to treatment. I understand. I used to be there.
And being in constant pain makes our lives revolve around finding adequate treatment. Who has the time or energy to fight when every day is a fight for our own survival?
I’m so glad you are finding my website helpful. And I’m very glad that you’re willing to become involved. I don’t know what that looks like, or how we should fight, but I know it’s important. So far, I’ve tried to keep up and comment on articles that shame pain patients and are a continuation of the drug war… I have a Disqus account, but I’m not on Facebook, so I can’t comment on those articles. If you’re on Facebook (or Twitter), maybe you could try.
Welcome, friend 🙂
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