Stop The Stigma Against Chronic Pain Sufferers

Today's post from paincommunity.org (see link below) is another very forceful article from Teresa Shaffer on behalf of chronic pain sufferers. Many people living with neuropathy fall into that category and should read this article if they feel doubted, demeaned or belittled by others, especially medical professionals and the media. She encourages people to be more proactive in fighting back against such stigma and she's quite right. Well worth a read.

Now is the Time to Scream, Holler and Shout!
Posted by Teresa Shaffer | August 19, 2014

I recently wrote a blog titled, Enough is Enough! Stop the Stigma Against People Living with Pain. This is the second entry sharing the frustration that I, along with other people living with pain, face every day. I am angry, fed up and I am not afraid to talk about it. Now is the time for me to scream, holler and shout!

I am sick to death of the media playing havoc with our lives with articles that are meant to cause fear and written with poorly researched information. I am sick to death of reading article after article written because someone who is out for political gain or to advance their own agenda. I am sick to death of their walking on the backs of people living with pain in order to achieve fame, power or other forms of influence.

From all of this biased and what I consider sloppy media coverage you would never know that there have been some really great advances in the science of pain and pain management. Pain continues to be misunderstood, untreated, undertreated or improperly treated and poor media coverage deserves to “take it on the chin” as they have contributed to this situation. Their sham journalism continues to deflate any hope that is out there and makes the situation seem dire for those living in pain.

People living with pain: You do have some wonderful allies out there like, The Pain Connection, the State Pain Policy Advocacy Network (SPPAN), National Pain Report, US Pain Foundation and The Pain Community (TPC) just to name a few. We need to step up and help those who are trying to help us. We can no longer hide away and wait for someone else to fix this problem.

We are being blamed for drug abuse in this country and this must stop. People living with pain are being used as stepping stones to move forward personal causes and political agendas.Are we to believe that this pretense is just about drug abuse?

Come on, really? Were we born yesterday?

Yes, absolutely there is a drug abuse problem in this country. Yes, people are dying from drug abuse. Yes, it is heartbreaking for the loved ones left behind to carry on. I can say without a doubt that I, along with most people living with pain, feel sadness for those families who have been affected. People living with pain do not want to hear of anyone dying from abuse just like we do not want to hear of people with pain who give up and commit suicide. Like chronic pain, addiction is a disease which deserves to be treated as such. Changing the formula of all the pain medications to try to make them tamper-resistant is one step forward but that is not going to stop drug abuse. Someone who is fighting the demons of abuse will always find a way to get what their body is craving. Treatment of the problem is key; the elephant in the room is that those who choose to abuse medications must receive treatment to help break the cycle of abuse.

We must use education and treatment to help curb the start of abuse. We must use education to stop young people from participating in “pill parties or pharm parties”, where all types of over the counter and prescription medications are placed in a bowl and people take them to get high. For some, the pills they take cause overdose and death. It is the behavior that is at fault, yet no one wishes to face this and take on the responsibility of dealing with the cause directly. It is far easier to demonize the medication, rather than the activity. Parents need to be better informed about these dangers.

Look, we should be working together to start moving forward and making a difference rather than against each other. We must start treating those who abuse so they can take back their lives and allow people living with pain to once again find healthcare providers willing to treat them. Do I need to remind you that chronic pain is a real and complex disease too?

So, stop putting the issue of drug abuse on the backs of people living with pain and start making a difference by treating addiction as a disease. Those who abuse do so to escape from the stress of life and to do that they seek an altered state of mind. People living with pain are not looking for that “high” or means of escape. We are desperately trying to find at least a brief moment of pain relief. We only want the chance to be able to participate in life with family and friends and to be able to continue to work and support our families.

To each of you who live with pain, I must be frank. We can no longer afford to sit back and complain behind closed doors about how stigma and discrimination is affecting us. We must stand up and be heard. Who has become my health provider nowadays? I ask this because it sure seems like my well-being and health care has been taken out of the hands of my health care provider or should I say stolen. Politicians, law enforcement, journalists and others with narrow points of view and self interest are the thieves. Their motives have nothing to do with what is in my best interest; I can assure you of that! My optimal health care depends on my health care provider and me! We need to tell these encroachers to butt out of our pain care!!

Do you honestly think that these “journalists” care about us, the ones living with pain? They would rather talk to self-proclaimed experts who spout unsubstantiated claims and pass it off as the truth. They don’t care that they are making it harder and harder for legitimate people living with pain to receive the care that is needed to live our lives with less pain. We are merely the “unintentional consequence”—the nameless, faceless statistic that is frequently misinterpreted or maligned. The almighty dollar is what serves as master. They aren’t living with pain so it is not hurting them. They have they own agenda, sell newspapers, magazines and get those hits from the internet, in other words, keep their jobs. So, articles are badly written, “facts” are not verified, stories are slanted to one-side to ensure those that read it become more fearful. These articles rarely tell both sides of the story which would be the right thing to do, take time to develop and result in what is considered good journalism—a fading talent.

Please don’t take the following statements wrong; I would never ever wish a life of chronic pain on any one. However, I have often wondered:
How fast these news articles would change and both sides of the story would be told IF the editors and/or writers were suddenly thrust into a life of pain.
To those politicians and others who are advocating for medications to be taken off the market: How fast do you think the tables would turn if it was you or a loved one dealing with pain?

I bet we would hear the person with pain’s side of the story then and the politicians and the media would move heaven and earth to ensure they or a loved one had access to all treatments available, including opioid pain medications. Gosh, insurance companies might even start paying for appropriate pain care! That would be a novel thought.

Here is reality. Those of us living with pain are not asking for special treatment; we only wish that we can have our pain treated with appropriate treatments including pain medications when/if appropriate. We are only asking, no we are begging for the right to be able to see a healthcare provider who is not afraid of the DEA breaking down his/her door. We are asking, no begging that we are able to go into a pharmacy and to fill our lawful prescriptions without the stares, without being “outed” in public that we are taking pain medication or the interrogation from pharmacists who are trying to decide if we are legitimate human beings or not.

Until you have lived with never-ending pain that literally takes your breath away and makes it impossible to sit, stand or lay down for any length of time, please stop thinking you know what is best for us. You, who live without pain, have no idea what a life of pain is like and I hope those of you who call yourselves experts in these media articles never do feel the pain I live with 24/7.

Please hear me. Stop the mistruths, the propaganda and promotion of your personal agenda. Start trying to make a difference in lessening drug abuse and improving pain care, in an effective way, that is guided by public health solutions and critical research rather than sanctions and policing. Work together with all interested parties and educate about medication safety. Stop the fiction and biased articles and start telling both sides of this story. Currently, we are just running in circles and chasing our tails. Drug abuse has continued on like a moving target while legitimate people living with pain are running head on to more and more barriers in care. People are being hurt on both sides of this issue. People are dying on both sides, too.

In the words of Forrest Gump, “Stupid is as stupid does”. I am tired of stupid, aren’t you? Now is the time to scream, holler and shout!

http://paincommunity.org/now-time-scream-holler-shout/

The Stigma Of Chronic Pain

Today's article from paincommunity.org (see link below) is a very relevant one for people with the sort of severe neuropathy that brings them chronic pain on a daily basis. Because strong pain medications have such a bad rap these days, being associated with addiction and social problems, chronic pain sufferers face a constant stigma from a largely unaware public. Being tarred with the same brush as junkies and dealers and criminal behaviour, is a cruel irony when all you want to do is to be able to get through the day relatively pain free. It's largely the fault of the media who gobble up stories of opioid addiction and lay the blame for society's ills at a supposed over-prescription of opiates for pleasure. Opioids are sometimes the only option remaining for chronic pain patients and if monitored and used properly, are a very useful tool but if you tell people you have to take methadon or oxycontin for your pain, you're immediately branded as being socially irresponsible. This article highlights the problem and has the complete support of this blog.
 

Enough is Enough! Stop the Stigma Against People Living with Pain
Posted by Teresa Shaffer | August 5, 2014

It seems like just about every media article talking about pain medications has become a feeding frenzy which reports one side of the story. They take advantage of the uninformed and promote fear with biased and unsubstantiated claims that everyone who is prescribed an opioid medication has or will become addicted to the medications. They feed into the fear that if you have a loved one or friend who is prescribed one of these medications then you had better watch them closely because once addicted they will steal, cheat and lie to get their “fix.” This, my friend, is propaganda [information which is biased or misleading nature and used to promote or publicize a particular political cause or point of view].

I am so sick of reading these articles. I am so angry at all those who continue to suggest, promote and endorse these types of stories to the media in an attempt to influence and sometimes brow beat government agencies and politicians to legislate tougher laws and regulations. They claim “their cause” is to address prescription drug abuse to prevent overdose and death, but their methods are short sighted. The so-called “un-intentional” consequence, to me, seems quite intentional. Why put the onus of substance abuse on people living with pain? We did not create this public health problem nor are most of us misusing, abusing or selling our pain medicine. We are too busy trying the best way we know how to live a worthwhile life with another public health problem—the undertreatment of pain! Why make it harder for the legitimate person with pain to obtain an effective medication needed to lessen their daily agony? Why scare our doctors out of wanting to help treat us? Don’t we have a right for some sense of normalcy in our lives?

You notice there is a lot of information missing from these articles. There is no mention of how pain medications allow some people living with pain to have functional lives. There is no mention of how pain medications allow some people living with pain to continue to work. There is no mention of how pain medications allow some people living with pain to have quality in their life. We want nothing more than to have our pain treated in a manner that allows us to live our lives just like people who have other chronic medical conditions, like heart disease, diabetes, cancer and so on. As with any chronic disease, it is not all about taking medications. As with other diseases, when you have chronic pain, it means a full treatment plan is required to help lessen the pain and regain function. People with pain often use exercise, physical therapy, water therapy, massage and so much more. It is NOT just a pill for every ill.

When someone reads one of these poorly researched and unbalanced articles, I can imagine that they start thinking about a family member or friend who lives with pain. Then, they may question whether that person has real or legitimate pain. I know readers must think that if you are taking an opioid pain medication for pain that you must be addicted to them. It’s no wonder; the definition of addiction as compared to physical dependence is often confused as one in the same and this is incorrect. This information is often touted and reinforced by so-called experts who know little about pain and its management and incorrectly equate pain treatment as all about the medications prescribed.

Please allow me to enlighten those of you who do not know the difference between tolerance, dependence, and addiction. These definitions have been recommended by respected medical societies, like the American Academy of Addiction Medicine (ASAM), the American Pain Society (APS) and the American Academy of Pain Medicine (AAPM).
Tolerance – Tolerance refers to a situation where a medicine becomes less effective over time. (Your body adapts and gets use to it.)
Dependence – Dependence means that a person who has been taking a medication for a long period of time can develop symptoms of withdrawal if the medication is suddenly stopped, the dose is lowered too quickly or another medication is given that reverses the effects. (Your body adapts and gets use to it.) This effect can happen with many medications not just pain medications, like steroids, certain heart medications and anti-depressants.
Addiction – Addiction is a primary, chronic disease of brain reward, motivation, memory and related [nervous system] circuitry (ASAM). It is a condition where there is craving for this substance, the compulsive use despite harm, and impulse control loss of how they use the medication. The person does not care that they are harming themselves or others; they will do whatever it takes to obtain medications. They will engage in unacceptable and unsafe behaviors.

If you have a past history or current history of substance abuse the chance you will develop a problem taking opioid medications is higher than someone who does not have that history. Your level of risk should be considered before opioids are recommended. Yet, with open communication and close monitoring by your health care professional, even those at higher risk can take these pain medications more safely.

It is important to emphasize that no matter what your circumstance that these medications can be prescribed appropriately by knowledgeable clinicians and you take the medication safely if you do so as directed and report any problems immediately.

So how do we change this growing stigma against people living with pain? How do we fight back?
We get out there and enjoy our lives. We get out and do what we want to do, when we want to do it. We don’t let the fact that we use a cane, walker, crutches, wheelchair and other medical devices define us as part of the problem of drug abuse.
We stay informed and share our knowledge. When a friend or family member questions about addiction, we make sure we can give them facts and direct them to reliable resources. We must stop all the myths that are out there.
We must fight back with truth. Get angry and use that energy in a positive way. Take the time—NO, MAKE THE TIME and read what is published by the media. Comment back. Give them the facts and remind them of the harm they are contributing to by fueling distortions and misconceptions. Make them learn the other side of the story; offer to be interviewed, submit a letter to the editor, write a blog—take them to task.

Together we can make a change for the better. We can help stop this feeding frenzy that is making our lives with pain much more difficult than it has to be. If we don’t, who will?

http://paincommunity.org/enough-enough-stop-stigma-people-living-pain/