“Advocating for Another” Carnival 2012 – Day 3
by Heather Grace IPJ Staff Writer
Life with chronic or intractable pain can be extremely challenging. There are so many variables that are simply not a factor for people with other illnesses. Pain is a disease that is widely misunderstood, and this breeds all kinds of problems. Here are the top 3 concerns we all face:
1. Effective Treatment
Diseases like diabetes or high blood pressure have simple treatment protocols. Nearly any doctor can treat a patient with elevated blood pressure or elevated blood sugar. Sadly, pain is a different story. Though most patients end up in front of a physician because they are experiencing some form of discomfort, treating pain has become a crisis worldwide.
The Journal of the American Geriatric Society (October, 2005) found that doctors generally receive only a few short hours of training in how to treat and cure pain. They were especially uninformed on the treatment of musculoskeletal, neuropathic and low back pain. Doctors also don’t receive training in multidisciplinary and alternative treatments via medical school.
The issue? Doctors are expected to learn more about pain and examining physical complaints while in residency, as well as in the early days of practice. This creates a huge gap in knowledge. Lack of knowledge makes it hard for doctors to know how to treat patients. Often, they just do what their mentors show them to do, and nothing more. If that mentor doesn’t feel comfortable treating pain, then neither will the new physician.
Pain sufferers acknowledge that pain care is in crisis. One survey of over 1,000 people by Purdue Pharma was quite revealing: 2/3 of pain patients said that their over-the-counter medication wasn’t working, while over 50% said their prescription medication wasn’t working. On average, people with pain had been to three doctors and taken four types of medication without success.
Some doctors are ill equipped to treat pain, while others are simply afraid. Doctors face scrutiny from medical boards, the Drug Enforcement Agency (DEA) and even insurers. Whatever the reason, I know many people who have spent years with untreated or undertreated pain. Many more are currently suffering. Writhing in pain, many pain sufferers are just trying to survive day to day, and sometimes hour to hour. Pain treatment is in crisis, and it is only getting worse each year.
2. Media Backlash
The media is a huge barrier to effective pain care. We’ve all seen the headlines. It seems there are overdose deaths all over the country everyday. The truth is, the number of deaths each year isn’t substantially increasing. About 15,000 people per year in the last several years have died with opioid pain medication in their system. Given the fact that chronic pain impacts upwards of 100 million people in the U.S. (IOM, June 2011), less than 2% of the country’s chronic pain patients die each year with opioid pain medication in their system. (See more on the so-called opioid “epidemic” at http://updates.pain-topics.org/2011/11/are-opioid-pain-reliever-deaths.html.)
The pervasive negative messages impact pain care on so many fronts. It doesn’t matter if prescription pain medication saves lives or not. As soon as an effective treatment is classified in news reports as addictive, dangerous and/or deadly, access to treatment becomes an even greater problem–even if the stories aren’t true. Media reports are believed, especially when the same information is repeated all over the place. Once a damaging story hits “the wire,” it spreads like wildfire. The biggest problem? The public believes news reports, never questioning their validity.
Even if a pain sufferer hasn’t seen all the headlines, family members are sure to voice their concerns. Chronic pain patients will then feel great shame about their need to take pain medication. Eventually they stop talking about their pain, and especially their pain treatment. Worse yet, the news reports make many believe that taking prescription pain medication is too risky. Patients often use alternatives like acetaminophen, ibuprofen and NSAIDS in large quantities. Even though this can damage internal organs, as pain increases, patients take larger and larger doses of these seemingly harmless over-the-counter medications.
The problem is compounded when the constant media bombardment intimidates physicians. Doctors become hesitant to prescribe pain medication, afraid of a backlash from their medical board or the DEA. Doctors also fear lawsuits from concerned family members, especially when a pain patient dies–even if the death is unrelated to the treatment.
Worst of all, the accurate stories in the media are often buried. There is so little information that doesn’t fall victim to sensational pain medication stereotypes. For stories you can count on, I recommend http://www.pain-topics.org and http://www.ppmjournal.com.
3. Support System Fades Away
We all have a really rough time dealing with the disease of pain. Not just because pain takes a lot out of us, both physically and emotionally. Sadly, that’s not the worst part. There is an awful, unspoken trauma people with pain experience when loved ones–the people that we believed would be there for us 100% no matter what–fade from the picture. They disappear when pain sufferers need their support most. If you’ve walked down the dark and uncertain path that is chronic pain, you know what I am talking about… People leave.
No matter how wonderful our friends and family are, they may not be by our side through the worst of our pain. Seriously ill people are often deserted by the same loved ones who said they’d always be by our side. It can be jarring to lose all sense of normalcy to pain, only to lose even more… when our support system becomes rocky.
We’ve all felt hurt and confused when our supposedly closest allies are not willing to be there through the rough spots. You realize that when people ask “how are you doing?” they don’t want the gory details. Instead of being a shoulder to cry on, most people want/expect to hear, “fine” in return. The losses really add up as we find out that so many people we thought were close friends were really just casual acquaintances.
Everyone I know who has chronic or intractable pain has also lost friends and family because they misunderstand pain. That’s the most devastating part. They love and trust you one moment, and once the diagnosis is shared, all faith in you is dashed. Instead of telling you their concerns, doubt swirls within your loved ones. They’re worried you’re a faker, or an attention-seeker, or maybe just lazy. Or worse. Sometimes they take media reports to heart and believe you’re crazy, or an addict. Or both. Losing people this way us a deep and painful wound.
Even people who believe you may leave. Some have a hard time seeing you suffer, in pain without any answers for years of your life. It hurts them, and it also makes them uncomfortable to be so powerless–unable to help. Sometimes, they fade away because it is easier than to be feel sad and helpless all the time.
Navigating the horrors of pain can be devastating! The challenges of life with chronic/intractable pain are many. It is not by any means easy to live with such a serious yet misunderstood illness. Being tough is a requirement–pain takes over every bit of who you once were, and forces you to begin again. If you’re lucky, you see some bright spots among these challenges. You fight bravely through the worst of it, and learn countless valuable life lessons. In the end you realize there is only one option in taking on such a challenge: if you can’t beat the pain–you learn to live with it, on good days and bad.
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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.
