As I sat in the jury room listening to my fellow jurors deliberating the case before us, I was suddenly struck with the similarities to how some people with pain are talked about and treated. Before us was a case of a convicted felon who had served his time. The charges against him included not registering when he moved to town. The facts:
- He moved into a motel that is used by transients who can pay by the day or the month.
- He did in fact register with the police as was required BUT he made the fatal error of entering the wrong room number. The address was correct except for the room number.
- When the probation officer came to check on him, the room from the window appeared to be vacant: bed made, no clothes seen, no garbage. The man who the probation officer was looking for was in the next room 211 rather than 210.
I voted not guilty, because I believed he had registered as required but being an imperfect human being he had entered the wrong room number. I know that I have done that before when I was traveling and staying in motels – mistakenly told someone the wrong room number. I was willing to give this man the benefit of the doubt. But the other jurors were not so inclined. They pointed out that he was a convicted felon, he knew what was required and he did not comply to the letter of the law. He was being held to a higher standard. In essence, he could never make a mistake again or risk more jail time.
So how does this compare to people with pain? As patients, we must:
- Take our meds exactly as directed, no more, no less without talking to our provider first.
- Follow all recommendations or risk losing our provider for the act of non-compliance.
- Try not to show emotion or raise our voice in frustration lest we risk being escorted out of the clinic or hospital by security.
- Sign opioid treatment agreements and submit to random drug testing.
- Be perfect; we can never cross the line, not even once or we risk losing not only our pain medications but our provider as well.
We, as individuals, are looked at with suspicion and raised eyebrows. We, as a group, are blamed for the rise in substance abuse and addiction in the US. No other patient group is held to this standard.
Think about this. Those with diabetes can raise and lower their insulin dose at will so they can have that extra dessert. People with hypertension can continue to receive medications and care even though they refuse to exercise, lose weight or make lifestyle changes. They can even choose not take their prescribed medications as directed and still not get discharged from the clinic. People with emphysema can continue to smoke and they will receive their medications and care. When someone is diagnosed with cardiac problems that cannot be easily managed by the primary provider; a referral is made to a specialist in cardiac medicine; chart notes and lab results are sent to the referral specialist. Phone calls are made and conversations are exchanged. All care is coordinated.
Not so for the person diagnosed with a pain problem. What happens when our primary provider feels he/she cannot handle the case or will no longer prescribe pain medications because it makes them feel uncomfortable with a dose that is considered too high or given too long? (Even if they were the very physicians who started, increased and continued that medication.) Better yet, what about when arbitrary limits on total daily dosage or the duration of treatment is set by the practice as a blanket policy or even worse when the practice abruptly decides to no longer will see chronic pain patients or prescribe opioids? Is a referral to a pain specialist considered? No!! People with pain have told that they must find another provider to treat their pain. NO REFERRAL not even a list of who they might call, just a directive to go find another provider for pain treatment. Yes, the practice will continue to see you for your diabetes, hypertension, renal failure and emphysema but they will not see you for your pain. How fair is that? How ethical is that? How legal is that? Why are people with pain held to a higher standard and treated as “second class” patients?
It has moved beyond discrimination and into legislation in West Virginia. West Virginia has passed laws to reclassify drug schedules of federally scheduled drugs into different classes. Tramadol, a non-narcotic has been moved into the same class as Oxycotin. Today, I was told that Hydrocodone was reschedule as well. This means I will have to get a new prescription every month in stead of every three months. I now have to pay for 12 doctor visits instead of 4. It’s egregious and excessive as well as a financial burden. I will also have random calls to report the amount of medication in my prescription bottles. The only way to fight against this abuse is legally in West Virginia. It will be nearly impossible to repeal.
Nickopedia, the situation that you mention is not unique to West Virginia. That was a decision that came from the FDA and it is a national law/rule now for ALL states. Is it fair? NO. Did it make getting your medications harder if not down right difficult to impossible? YES.
So what are we to do? Whining helps no one. Taking action does! Write to your legislators both state and federal. Tell them your story. encourage others to tell their stories. Help someone else tell their story. Keep telling the story until someone listens. Flood their offices with weekly letters, phone calls, emails actually work the best as Snail mail scares them and we sure do not want to scare them.
keep track of times that you are told untruths about prescriptions. dates, times, who. Keep track of conversations you have had with others in similar situations…again dates and names and contact info. It will come in handy to back up your story.
Where one person in pain is discriminated against there are more than a 1000 more who have not spoken up, who remain silent; who may be scared to speak up for fear of retaliation even greater than their present situation. But I ask what could be worse than being in pain and then being singled out for discrimination, care that is less than quality or effective.
team with others in your town…do a meetup… talk to others; spread the word. write a letter to the editor.
make comments on all negative media…let them know the truth.
Nick – see blog https://paincommunity.org/old-pain-medications-new-rules/
It explains what happened.
Dionetta this is an outstanding blog. People living with pain are not only held to higher standards but there are many healthcare providers and folks in the general public who judge us all to be addicts. They do not take the time to learn about pain and/or refuse to believe that we must utilize pain medications to help us to have some normalcy in our lives and quality of life.
Noki4, thank you. Glad you thought it was worth reading. I can not tell you how upset I was as I tried to advocate for this guy and I felt like I was doing what I do when I encounter biased people who think anyone in pain is lazy and not worthy of pain relief.
I want to be around when (God forbid) they are smitten with chronic pain…or even acute pain that is not relieved. I want to say…see what did I tell you…can you understand NOW!! but actually when I WAS faced with that very situation I could not not do what I do for anyone in pain…I worked diligently for several hours to get the pain under control without judgement, without an attitude, without poking fingers. I just did my job as compassionately as I could. The next day I had the conversation as he (an ortho Doc who just had major – very painful surgery) sat in bed and said to me “I was never so glad to see you in all my life” I told him to NEVER forget this. of course he did some time down the road AND I, true to my nature reminded him of his ordeal in the recovery room when he was ashen colored, white knuckling it, and asking- no begging for relief.
He who thought that 2 tylenol after a hip or knee replacement what sufficient for “most” people. “I fixed the problem so they should have less pain” ARE YOU KIDDING ME? Let me take a saw and saw off your joint…then take a hammer and chisel to implant the new hip or knee joint. Let me see if this hurts???
Now, how do we stop this discrimination?
Micke, as frustrating as it is we need to continue to stand up and shout. This past 4 months I have received 4 calls (3 in the past 2 weeks) from people in pain in WA state who need help finding resources. They find me through the Seattle times article…they write to Elin and then she refers to me. we are now banding together to approach the Seattle times to see if they will do a follow up to the pain rules 4 years later to see where we are. Some state officials are proud of the fact that prescriptions are decreasing and also they are denying more applications for prescriptive authority saying they are concerned for the safety of the general public. Just saw they refused to grant an extension and broadening of prescriptive authority to Naturopaths. reason: we can not increase the providers who are prescribing controlled medications if we want to stem the prescribing of opioids in WA state. WHAT??? Same old BS.
It is frustrating when I read the reports of MD’s and Nurses who are abusing drugs and losing their licenses in WA state. Every month I get the report…and it sickens me to see the numbers. How do we fight this? Education…REAL education!! get some pain patients on a panel and do a dog and pony show.
The Moms of kids who have died of overdoses get to do it…why can’t we??? Put a REAL face on it.
Frustrating for me as right now I am dealing with my own pain as well. Thought I really understood chronic pain until Sept 2013 when my life went upside down and sideways. Post viral seronegative arthritis.Received the official diagnosis today. My hands and wrists are the worst so typing is now a real chore. No rheumatologist in this part of the state so I will have to go to Seattle. I am finding that resources for people in pain are scarcer than ever. Pain clinics are so overwhelmed it takes an act of congress to get an appointment in less than 6 months if they will see you at all.
There are some very compassionate physician out there but they are far and few inbetween. I am lucky I have a team that is very patient centered and concerned about how the pain is affecting my life. They listen, They give me just about anything I ask for. The meds are carefully prescribed each month with careful follow up. I even got a flare up plan written in my chart. they all know me from my days as the pain management nurse at the hospital. In those days they dreaded seeing me…they’d say oh no here she comes…how are our patient’s doing? or they’d call me and ask me to come do that thing that I do. (i.e. help their patients get relief from the pain using multimodal techniques) I am still know affectionately as the Pain Lady by many.