Sunday, December 4, 2011

Pain is not a criminal activity

I don't like being in pain, for the obvious reasons. But there are emotional reasons I don't like being in pain, as well. Pain makes me vulnerable. It makes me feel helpless and powerless. And, because of my past, it can feel like punishment for some unknown wrong. There are feelings of guilt, too, that I am weakened like this. My father raised me to be incredibly independent. I could change the tire on a car before I could legally drive. Asking for help is difficult for me. I despise being a burden. And when it's an issue about pain, I know I'm getting myself into a situation where I may be labeled a drug-seeker and denied care. It's happened before. The potential is frightening. I know I'm telling the truth, but there's no way for them to know that, unless they can see it on a scan.

I've been to the ER about 3 times for flank pain. I knew by the attitudes of the doctors and nurses, they believed I was a woman who just couldn't handle her PMS. There was no blood in my urine. No sign of a kidney stone. Because of cost-cutting measures, scans aren't used as frequently. This is probably my fourth kidney stone, I have more sitting in both kidneys, and tonight was the first time they verified using a CT scan. Up until this point, I was dismissed as a hysterical woman (politely, though). Heck, I was starting to think I was a hysterical woman and just needed to tough it out more. But I couldn't, and yes, there really was something wrong, thank you very much. I joke that I want on my tombstone: "I told you I was sick." Because even this time I had no blood in my urine.

There needs to be the opportunity for more trust between patients and doctors. I know I'm not an addict, but there's not way to see that on a scan. And we're putting doctors careers on the line if they make a mistake. How is that fair? They're trained in the arts of healing. Why on earth are we making them responsible for the behavior of their patients? That's like blaming my car salesman for my car accident. It's silly. Right now we're asking out doctors to be cops. This isn't fair. That sets up doctors to be suspicious and makes patients defensive. Doctors worry about losing their livelihood. Patients fear having to endure soul-crushing, life-stopping pain. We need to start treating addiction like a disease and not a criminal activity. As long as no one can come forward about their addiction because of fear of punishment, it's going to stay in the shadows, festering.

I'm always terrified that something I say, something I do is going to make them think I'm a junkie out to pull a fast one. I'm already vulnerable, weak and frightened by my pain. I don't need to be terrified about every little thing I say on top of that. I've been trying to get my peripheral neuropathy diagnosed for years, but it wasn't until I lost the feeling of "sharp" and "cold" on my feet that anyone started listening. In the meantime, I suffered.

The so-called "safe guards" don't help either. When a mistake arises, even an honest one, the patient is the first suspect. Here's a common example of how a simple mistake can impact an entire life:
The worst part to me was that it was as though it was no big deal to them to inconvenience me, and I felt that my word that I'm constantly wearing my pain patch means nothing if the test doesn't reflect that. How can I prove to them this is true? It's simply my word against the test, right?

When I went in for my retest I decided to ask a nurse to look at my back and verify that I was in fact wearing the patch. She declined to do so, but was receptive to my concerns and very understanding. She instructed the person who processes the urine tests to look into the paperwork a bit deeper, which I appreciated. Low and behold, they'd submitted my test to be compared to a different medication than the one I actually take, which is why the test didn't find any evidence of the medication in my urine. It was looking for something I don't take.

Identifying the mistake was a big relief, but why did I have to be the one to bring up that possibility? If I hadn't they'd have submitted the test the exact same way and I'd still be under scrutiny and feel like they consider me a criminal and liar. Even worse I'd be worried they might decide not to treat me anymore.
Pain Management Drug Testing: Demoralizing Mistrust - Diana Lee

Is addiction a bad thing? Yes. But is it a criminal thing? Wouldn't it be more productive to treat it like a disease? Isn't that what we try to do with rehab centers? Why have the threat of prison there? Why would anyone want to come forward and say, "I'm an addict, I need help..." when doing so could get you locked up?

Making drug use a criminal activity is counter-productive. It harms patients who have to defend their pain. It hurts doctors who have to defend their medical decisions. It denies addicts a safe path to recovery. It costs and obscene amount of money for terrible results. One nurse, who would like to remain anonymous, said that even in her office, whenever a pain patient called in for their monthly refill, everyone in the office rolled their eyes, "it's the junkie calling for their monthly fix..." they all thought. But the staff never had that attitude towards diabetics calling in for their monthly insulin refill. Being an honest pain patient carries a stigma. We're discriminated against. We're punished for being in pain.

We need to end the War on Drugs and decriminalize drug use. We need to bring back the rehab clinics we lost after 1992. It needs to be a disease covered by health insurance. We need to bring back family programs for the support of the family of the addict, and have these covered by insurance as well. We need to be honest that relapse is just as normal with asthmatics, diabetics, heart patients, and addicts, and not give up when a relapse happens. When an addict can honestly walk forward and say, "I need a fix," and get it, then when I come forward and say, "I'm in pain," they know I'm telling the truth. I know it goes against almost every fiber in my being to allow an addict to just engage in that activity. But the truth is judging these people does no good for anyone. We must embrace this problem rather than run from it. We need to be forgiving. Most addicts outgrow use on their own. For the rest, there is treatment and management of the disease. We are sophisticated enough as a culture to handle this.

I had a successful ER visit this time. I got the right treatment. I didn't have to suffer. But there have been long stretches of time where I did suffer. I don't ever want to go through that again. Neither should anyone else have to. I ask this for everyone suffering. Let it begin with you. Write your representative. Let them know that you would like to see legislation that would decriminalize drug use. Ask them to end the War on Drugs. Ask them to do this for everyone's sake. Site the CATO article or any other source you find worthy. (One group I particularly like is Law Enforcement Against Prohibition.) Raise your voice. Be heard. We can change this. And then pain won't be suspected as a criminal activity.

Thank you


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