Chronic Pain Sufferers - CDC Social Media Campaign BackfiresMy main goal for this blog is to use my skills I've obtained over the last 23 years of working in occupational therapy, along with my experiences as a chronic pain survivor, to come along side of other survivors to encourage and educate with various "tools" to learn to live, as best we can, a new "normal" in this life of pain.
Living a life of chronic pain is extremely difficult on so many levels! With so much going on lately with the FDA, NIH and the CDC looking into how to prevent so many people from becoming addicted to narcotics and these policies overshadowing the treatment of many that are living with pain , leaving many feeling extremely concerned with where all this is going and how it will affect their daily lives of living with this horrific pain. All any of us want to do is be able to function as best we can and have somewhat of a life! And for many, the means having to take these medications that are in question. Medications, I can safely say, most of us DO NOT WANT TO HAVE TO TAKE! We would rather have our lives back! Nonetheless, these are the medications being scrutinized.
With that being said, I want to say I am not much for writing negatively about how we are perceived by the medical community, as well as the general public. After going through a nightmare of trying to obtain help with my chronic pain, I have found exceptional physicians to be a part of my team to help keep me safe and as pain free as possible. For me, pain free as possible, is sadly 7-8/10, 24/7, after my medications. It took a very long time to get to that, as I will share below. But, this level of treatment is always in question with each and every doctor appointment I go to. I know it is necessary, but what bothers me is what is happening with all these studies, their outcomes and if we are going to be allowed to protected by our physicians with the political policies that are coming our way. Yes, for many of us it comes down to our daily living and what helps us to function. For some of us that is a very low level of activity due to the pain we endure on a daily basis. We need to be aware of what is going on out there with the policy makers and have our voices be heard!
In addition to how we are treated by the medical community, is the way we are seen by the general public, including some of our family and friends. Due to the lack of understanding towards many chronic pain survivors, the way we are treated can deeply affect us. We rely on our loved ones to encourage and uplift us in this journey. And sometimes it is not happening! This leave us feeling demeaned, dismissed and isolate. As well as many other emotions that affect many on various levels of "so what" for some, to being part of a cause for a deep depression for others.
When it come to the social media and the variety of ways things come across about chronic pain patients I am concerned about where they lead. Especially when what they present impacts the overall public awareness! As many chronic pain survivors can testify this usually encompasses negative comments and attitudes toward chronic pain sufferers and the use of narcotics.
It is, after all, a part of what we all deal with on some level, thus not something we can hide from. CDC Social Media Campaign Backfires
This is not too long of an article! I liked this part:
"There are really two problems with prescription drugs. One is the problem of abuse. But the other problem is patients who have pain and have a legitimate medical need for these drugs and can't access them," said Bob Twillman, PhD, Executive Director of the American Academy of Pain Management.
"I think they (the CDC) know what the problems are, but for some reason they don't want to deal with the chronic pain problem. I've criticized them for calling the problem of prescription drug overdoses and prescription drug abuse an 'epidemic' and taking a much, much bigger problem like chronic pain and not saying anything about it. Because to me, if 16,000 people a year dying from overdoses is an epidemic, then 100 million people with chronic pain must be a pandemic."
I hate the fact that so many families and friends have to go through such horrendous grieving due to losing loved ones because of addiction and death to narcotics. It is beyond heart wrenching! This has affected many t of us in this world to some degree. There is no arguing that this is a major issue of concern, as it should be! It is extremely necessary that there are steps being taken to help those that are addicted to their medication, as well as things being put into place to help prevent it in the first place! There is no arguing about any of that whatsoever! .
However, it is appalling that of the 100 million chronic pain sufferers in America, (35 million living with moderate to severe pain), that the 2% abusing their medications is overshadowing the fact that the other 98% are out there suffering and require treatment! Treatment that they should not have to practically beg for, without being accused of being a drug seeker, faker or any other negative reaction when one asks for help! The National Institute of Health states that 40-70% are either under treated or not receiving proper treatment and "... the prevalence of chronic pain and the increasing use of opioids have created a “silent epidemic” of distress, disability, and danger to a large percentage of Americans." (NIH Study, January 2015, http://annals.org/article.aspx?articleid=2089371)
These sufferers are overlooked in the media! No, that is not true, they are not overlooked, they are portrayed by the media, as well as the general public, as drug seekers, pill poppers, drug abusers, as well as other demeaning comments. Movies, such as "Cake" has done nothing but feed the fuel on a burning situation for this pandemic going on! It is safe to say that those accusers have no idea whatsoever what the chronic pain sufferer deals with! Nor have most ever really sat down with a sufferer and took the time to learn what it is like. Have these accusers ever gone to any of the multiple appointments to various specialists, therapists, or any of the many place that sufferers have gone to to seek help? Do any of the accusers know how to read any of the objective findings from MRI's, CT Myelograms, and the variety of other tests sufferers endure to try and find out what is wrong so they can find a solution and get back to their life that has been shredded?
This lack of appropriate treatment and being under treated is a major concern! There are many stories out there that people have verbalized about trying to find help and the inappropriate treatment of healthcare workers. I for one could fill up pages of what I endured after two cervical and one lumbar spine surgeries due to multiple spine issues. This last two surgeries did not help all my issues and are considered failures by the surgeons. In addition to those spine issues, the resulting nerve damage which led to Central Pain Syndrome, caused 8-9/10 pain, leaving me curled up in a ball, shaking, gasping for air and eventually vomiting! After the surgeon, who documented that "this patient will never be without pain," referred me to a pain clinic, I endured many episodes of what I would call verbal abuse. I was encouraged by my primary care physician to continue to go to this pain doctor because, "they would know how to best treat your pain." So I did as I was told.
For months I endured multiple injections into my nerves and around them, (that had only achieved to cause more pain), multiple other visits to this pain doctor to assess the different medication trials (resulting in a couple visits to the ER for anaphalaxis and other allergic reactions to the medications trialed), a neurologist, a behavior specialist and even more physical therapy. Being an introvert and the "perfect obedient patient" that did as I was told, I just kept going along with whatever they wanted to try, hoping for relief with each treatment! After 10 months of this, and continuing to live in moderate to severe pain, my husband encouraged me to ask for stronger pain medication. He begged, "If you don't do it for yourself, please do it for me. I can't continue to watch you go through this!" So at my next visit I asked for help for relief.
I was hoping for some relief, but I was yelled at by the physician! Yes, yelled at! I was told I could, "get on out of there if I expected perfection!" Yes, that did happen! And this was repeated three times by the time I left my appointment. I had experienced highly unprofessional treatment all along by not just the pain doctor, but the physician assistant, nurse, medical assistant, as well as the behavioral therapist! This was at a pain clinic! This was with documented proof of what was wrong with me! As a patient, I was crushed! I lost what hope I had left and felt alienated by those who were suppose to be a help to me. As a chronic pain sufferer, I just wanted to die! As a healthcare worker, I was appalled! As I continued on this journey of chronic pain I found out that this was not rare at all! Even now it infuriates me! It is wrong! This should not be happening to anyone!
That was just a small part of my part journey. Most of the other health care providers I see are extremely compassionate and professional! It took 15 months to finally hear, "Lets see what we can do to get you out of this pain." From the time of surgery, dealing with all the injections, PT, behavioral therapy and trialing multiple types of non-narcotic nerve pain medications at the pain clinic, going back to my PCP to ask for a referral to another doctor, seeing this other doctor multiple times for many more test and trials of yet more medications, being referred again to another specialist and finally one more referral to another specialist and more tests. AND (if I haven't totally lost you) after all this, it is said to me by an obviously ignorant person, "Yeah, I have a friend who was on pain meds! I know all about it! Those doctors just prescribe that stuff, people get addicted and they keep on prescribing it! Their a bunch of pill poppers! PILL POPPERS!"
CAN YOU BELIEVE THAT? Yes, I know you can! I am sure many of you have dealt with that. For that is how many in society react to those in chronic pain. I am learning to understand these people and be forgiving. I pray they may never really know what it is like, because I would not wish this life on anyone! We need to try to be forgiving and not be bitter. That does nothing to help the pain!
Whether an epidemic (the drug abusers) or pandemic (the 100 million chronic pain sufferers), both are horrific! It is a good thing more people are speaking up in social media for all of us in pain! The public needs to be aware of those suffering and learn that the majority are not abusing their medications! It would be awesome if the overall opinion of the public would change to be supporting and understanding to the chronic pain sufferers they come across in their life. A kind word goes a long way!
It is my hope the current work being done by the National Institute Health from the studies they have found bring forth solutions for all chronic pain sufferers! Those abusing their medications and those not abusing their medication. An understanding, as well as tolerance, for the majority accused of being "druggies" due to living in chronic pain every single day of their lives and needing these medications to be functional! Many would rather not have to take these medications. Many would love to get back to their life before pain! Many had much loved careers and grieve that loss! Not to mention the financial aspects of it all! There are so many losses chronic pain sufferers deal with.
We need to be aware of what is going on out there with the policy makers and have our voices be heard!