“Advocating for Another” Carnival 2012 – Day 4
by Heather Grace IPJ Staff Writer
There are plenty of things the average person doesn’t know about the pain community. Let’s focus on a really harmful myth: The stereotype about pain patients being a bunch of crazed addicts. It really rubs me the wrong way. Our reality couldn’t be further from the truth. And it’s time you heard some of the reasons why. Here we go:
First, I think it’s important to set the record straight regarding the myth that people with pain who are prescribed pain medication are in serious danger of becoming addicts. Chronic/intractable patients who take pain medication are no more likely to become addicted than the general public, despite the media mudslinging. Their biased attacks are damaging to pain patients–threatening access to vital medication throughout the country. I’m not sure why the media has resorted to such harmful tactics, but we’re not actually that newsworthy. Though fact-based stories on addiction stats can be boring, we’re just like the rest of the country. According to government statistics (SAMHSA), the addiction rates are well under 5%.
Living with Pain
Regardless of the public’s often negative viewpoint, people with diseaseses like Central Pain Syndrome, Adhesive Arachnoiditis or Trigeminal Neuralgia often depend on prescription medication. It’s an important part of many patients’ pain care protocol. Not because they want to use this medication; it’s not because they enjoy the ongoing doubt by family and friends, the hesitation of physicians, the media attacks that end up riling up the public into near-frenzy. As patients, each of us takes whatever treatment works for us, because we want some semblance of a life back. Period.
We never asked for any of this. Personally I’m shy by nature. I don’t want to be the center of attention for any reason. But to question my character, to believe I am capable of being a bad person, scheming and creating this whole “illness” — that makes me sick to my stomach.
I’m not an addict. I’m not enjoying one minute of any of this. I didn’t enjoy the years of mistrust that kept me from getting care. I didn’t enjoy the fact that I was a rag doll being tossed around the Worker’s Comp System at will. And, I certainly don’t enjoy the fact that I will live with intractable pain for the rest of my life because they didn’t treat my illness effectively when I begged them over and over for their help. Even more, I don’t enjoy all the worry this situation creates.
I don’t think most people realize that we who life under the microscope merely because we are sick absolutely hate it. I hate that I have to worry every minute about my doctor being there for me from month to month. What if he retired? Or was investigated and bankrupted by his defense? What if he just couldn’t take the pressure any more and walked away? Worry about the pharmacy having my medication, or like my doc, being investigated and going broke. Then, there’s worrying I will get a knock on my door from the friendly neighborhood DEA. Merely being a patient has gotten many people arrested, and even imprisoned–and I know I wouldn’t survive that! And then there’s the very real concern that federal or state laws will regulate me right into an early grave.
If you think I’m a bad example and no one else worries like this, think again. I’ve talked to many others and they are all scared. As if the stress is good for us! If your illness was constantly in the media spotlight, how would you feel? What if there was also increasingly tough legislation that you knew was endangering people’s lives all over the country? It’s a scary time to be a pain patient.
I even dislike the process and all the nonsense that goes with it. Unlike other illnesses, we cannot just see the doctor every 3-4 months or longer. Nope. Even though I like my doctor, I despise being forced to check in like clockwork, monthly. Same with the meds. We cannot get 90 days worth of medication at a time with a bunch of refills–despite the fact that this is a lifelong illness. Oh no, we’re at the pharmacy every 30 days. And what’s even more annoying to me… refills are not allowed. And, if you happen to see your doc a little early? That makes things even more fun. When I go to the pharmacy, the prescription has to be put on hold and filled later. Why? It hasn’t been long enough since I last filled it. What’s even more upsetting is that I am stuck in California. I cannot move–even if living elsewhere may be cheaper, because I’m terrified I couldn’t find a decent doctor elsewhere. (I’m blessed to have a very good one here.)
Reading all of the above should present a pretty clear picture of all the reasons why none of us enjoy being reliant on opioid medication for our treatment. Why on earth would any of us want to live this way? It’s not a choice–that’s what people need to understand. Not at all.
And, here’s the real shocker. Like most people who are in severe, constant pain, I have never gotten a “high” feeling from my medication. Ever. I think that would surprise most people. But, here’s the thing… We need the medication just as if we had anemia and needed to take iron. Or had diabetes and needed insulin. It’s the correct treatment for a serious illness. I’ve talked to many other people who’ve had the same experience. We don’t see why people abuse pain medication. It doesn’t make sense to us, because we’ve never seen that side of these medications. To us, they are vital treatments for a gravely serious disease. To us, pain medication is a lifesaving treatment. Period.
I wouldn’t wish my pain on anyone. Ever. But, I really do wish everyone would have the decency to believe us when we say we’re in serious pain and persist with our pleas for help over so many years. All we want is some mercy. Some understanding. The willingness to see us for who we are without judging. To believe us. The fact that we don’t have that from the world around us is what really surprises me.
People with chronic and intractable pain are just like anyone with a life-threatening health problem. We very ill people who need ongoing access to a truly vital treatment. Is that really so difficult to understand?
The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.
© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.