A Pained Life: Awareness Month Misses Awareness

A Pained Life: Awareness Month Misses Awareness

September is National Pain Awareness Month. Unfortunately, few people seem to know or, honestly, care.

pain-month-awarenessI think the reason for that is simple.

I appreciate the American Chronic Pain Association’s efforts at creating the first Pain Awareness Month in 2001. I just wish they had added the word “chronic”.

Everyone has pain at one time or another. Hit your thumb with a hammer, get a splinter, etc. So do we need more “awareness” of pain? Heck, we are all aware of pain. The minute we do something that results in our being hurt or if we become ill and pain is a symptom, our awareness is awakened.

I regret that the times I asked the Pennsylvania legislature to declare September as Women in Pain Awareness Month it had not occurred to me to use the word “chronic”. The senators I asked were kind enough to unanimously pass the resolution all four times I requested it, but I did not bother this year or last because I could not get anyone to take notice of it. Women are in pain? So what seemed to be the attitude.

Words matter. Especially the word “chronic”.

Many of us have disorders for which there is an awareness day or even a full month. Lupus, fibromyalgia, multiple sclerosis, and rheumatoid arthritis, just for starters.

Often the news media will make mention of these individual days. And yet, when I asked my local boro to go teal for Trigeminal Neuralgia Awareness Day, they said “No. If we do it for you we have to do it for all.”

To me that answer seemed to embody the reaction of many people to these “awareness” days. There are too many of them. People get weary of hearing about these illnesses, which are mostly foreign to them. The weariness, however, seems to disappear when it comes to cancer and other major diseases. Almost everyone knows someone who has them. Or they have it themselves.

The problem is we are weary too. Weary of having pain every day, every hour, every minute.

Whether it is Pain Awareness Month or not, we are aware of chronic pain.

It is up to us to go to the next step.

Now and every day, we have to figure out a way to bring more attention and awareness of chronic pain to those who are not in pain.  It is up to us do what other illnesses do not require: Help those who do not know the reality of chronic pain accept and believe that it exists.

Help them understand that those of us living with chronic pain deserve not only awareness and acknowledgement, but kudos for the fight we mount daily against this horrid monster.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

There are 14 comments for this article
  1. Johnna Stahl at 12:12 am

    BL said: “This pain is not severe enough to prevent someone from doing activities of daily living like showering and preparing a meal.”

    I feel lucky that I am still able to shower and prepare meals by and for myself, but these activities take up only a small percentage of a person’s day. I would also feel lucky if I was always able to take a daily walk, or plan more than one day in advance — but it’s not like pain sticks to a schedule.

    I guess part of the problem is the vast number of stakeholders that are responsible for deciding who’s pain is, and which kinds of pain are, “severe” enough to deserve treatment — and I don’t see how anyone can decide this for someone else.

  2. BL at 7:10 pm

    Johnna Stahl, you said “pain is a fact of life” and you are correct. Part of the argument dealing with chronic pain is that some of the patients are being treated for the pains that comes with living and getting older. This pain is not severe enough to prevent someone from doing activities of daily living like showering and preparing a meal. The pain that comes with living and getting old is an inconvience and may not be pleasant, but it can’t be compared to chronic severe pain that prevents someone from doing the basic activities of daily living.

    People would rather pop a pill than change their life style to fit their age and/or medical condition. And I believe that this is why there is so much apathy in the general public and medical community. If a person needs the pain meds to function on the most basic level, the view seems to be a little more understanding.

  3. Johnna Stahl at 2:25 am

    I guess I was thinking more about how it is easier for me, as a pain patient, to spot pain “behaviors,” than it might be for a doctor (who doesn’t suffer from chronic pain). And I was also thinking more about how you can see pain in someone’s face, in their eyes, even if it is masked in their physical behavior.

    Dr. Quintner said: “In my opinion, the question posed by Jackson remains unanswered.”

    “Why is pain, something invisible and experienced by everyone—and therefore unlike the kinds of characteristics that usually lead to stigmatization— so often stigmatizing in its chronic form? [Jackson, 2005]”

    Because the stigma hasn’t been placed directly on pain, but on the treatments for pain. Those treatments include drugs, and we haven’t fought the War on Drugs for this long for nothin’.

    Because pain can’t be measured with current technology. And because how we experience pain is partially due to our perceptions — which also can’t be measured.

    Because unless a medical condition can be measured, it appears it’s not really a legitimate medical condition. (Although, how behavioral conditions are currently measured doesn’t seem very legitimate either — or else most of us really suffer from ADD.)

    Because the stigma is also against a medical condition — chronic pain — which can be disabling, but which many think involves patients who are faking and just too lazy to work. (One reason why many medical cannabis states refuse to include chronic pain — and PTSD — in the list of approved medical conditions.)

    Because treating chronic pain includes both physical and mental pain, and we all know how society stigmatizes mental conditions (many of which also can’t be measured).

    Because pain is a fact of life — and some people believe if you can’t handle it, you’re weak, not in need of medical attention. After all, how do you treat human weakness?

  4. John Quintner at 6:42 pm

    Johnna, you are referring to what are known as pain behaviours, which as you correctly say are observable signs. But the lived experience of pain is more than the sum of pain behaviours.

    In my opinion, the question posed by Jackson remains unanswered.

  5. Johnna Stahl at 1:50 am

    You know, they say pain is invisible, and it is… But if you take the time to look closely enough, pain can be seen.

    Pain patients learn to become good at pretending they’re not in constant pain — which is an exhausting practice — but there ARE signs; you just have to look for them.

    Thanks for the info, Dr. Quintner.

  6. John Quintner at 5:55 pm

    “Why is pain, something invisible and experienced by everyone—and therefore unlike the kinds of characteristics that usually lead to stigmatization— so often stigmatizing in its chronic form? [Jackson, 2005]”

    Some of us in Australia have long been pondering this question, and particularly so now that destigmatizing chronic pain sufferers is a major priority objective of our National Pain Strategy [National Pain Strategy, 2010].

    In our paper we suggested: ‘[T]he extinction of empathy, which we refer to as “negative empathy,” can overwhelm health professionals, allowing the entry of negative community stereotypes of chronic pain sufferers and add to their stigmatization. Prevailing dualistic frames of reference encourage this process [Cohen et al. 2011].’

    We concluded that “greater awareness by health professionals of their own potential, often inadvertent, contribution to the stigmatization of their patients with chronic pain may serve as a basis for an expanded model of clinical engagement.”

    Carol, I applaud your unswerving dedication to the cause of helping fellow pain sufferers. I hope these few insights from distant shores will be relevant to this important discussion.

    References:

    Cohen ML, et al. Stigmatization of patients with chronic pain: the extinction of empathy. Pain Med 2011; 12: 1637-43. Available at: http://www.painaustralia.org.au/healthcare-professionals/research.html

    National Pain Strategy: Pain Management for all Australians. National Pain Summit Initiative; April 2010. Available at: http://www.painsummit.org.au/the-national-pain-strategy/national-pain-strategy.html

    Jackson JE. Stigma, liminality, and chronic pain. Am Ethnol 2005;32:332–53.

  7. Johnna Stahl at 12:05 am

    I can’t fault pain patients for not signing petitions or being unable to stand up and fight — especially when many of us are fighting our doctors, our pharmacists, our insurance companies, our stigma, our pain…

    And many of us are just fighting for a reason to live.

  8. BL at 11:11 am

    Johnna Stahl, I said “perhaps” the majority were being adequately treated. You are correct, having a door slammed in your face every time you knock on one, is exhausting alone. Combine that with the physical, mental, emotional and financial cost of chronic severe pain and one stays depleted.

    Another reason it is so difficult to get supposrt is because chronic pain isn’t terminal. If it were, the support for adequate treatment would be there like it was and is for HIV and AIDS. I understand that some commit suicide due to lack of proper pain management. I also understand that the side effects of not having chronic pain properly treated, like complications from severe falls, can lead to death. My point is that the picture of the cost of not receiving adequate pain management, in every aspect, Must over shadow the picture of the cost of drug addiction and diversion. And that appears to be a picture that hasn’t been taken, because enough people haven’t showed up for it.

  9. Dr Alan Russell at 8:47 am

    We have done a very poor job in getting the image and problem of chronic pain in the public eye.The cost in suffering,economical loss etc is vast.We need help in developing an imagine.
    Funding is pathetic unless a patent is in place.Look at Boron it could save a third of health care budget if developed,no patent,no profit.
    We do not have the right formula to go forwards,organisation is lacking

  10. Johnna Stahl at 11:55 pm

    Nobody wants to hear or talk about pain. And a lot of people think managing pain is a matter of personal strength, not a medical or public health issue. In other words, it’s our problem.

    And because pain patients use opioids for treatment, the abuse in the general population is our problem too. We’ve been demonized, criminalized, and marginalized… and most of us are too weak and scared to fight back. We might as well be prisoners behind bars, without any rights or support — only our steel bars are invisible.

    So, when BL offers an opinion like, “the majority of those who suffer from chronic pain are being adequately treated,” it makes me just want to scream. I could go into the numerous reasons why this isn’t true, but I’m tired, I’m in pain, and I don’t have the patience to educate those who refuse to learn.

    See, what happens when you fight back is you get crushed. I got the news in the mail today that my long term disability benefits have been discontinued. Why? Because I tried to fight back. Do ya’ll know how expensive lawyers are? If this Foundation wants to help pain patients, how about gathering some lawyers who will work pro bono? The changes that need to be made are in the laws, which can’t be done by individual pain patients.

    Take some pages out of the playbook used by marijuana activists, and even the gay rights movement, and find some resources that will help support the disabled in keeping their benefits. Because, seriously, there is no help to be found (that doesn’t cost an arm and a leg).

    And when you’re terrified of losing your benefits (or catching the eye of the DEA), you don’t make waves. You don’t sign petitions. You sit down and shut up.

    Things are only getting worse for pain patients, and I don’t see it getting better any time soon. Of course, the anti-drug and rehabilitation movements are funded by the federal government, whereas advocacy for pain patients is not. How do we change that?

    I watched an excellent movie recently, called “The Normal Heart.” It’s about the beginning of the AIDS crisis, and how no one would help the gay community. And these patients were dying. (The Dallas Buyer’s Club is also a great movie about the drugs AIDS patients were using before they were approved by the FDA.)

    I know that, as a chronic pain patient, I do not face the same amount of discrimination that gay people do. But I couldn’t help comparing their predicament with chronic pain patients. The biggest difference between AIDS (in the beginning) and a chronic pain condition is that chronic pain isn’t immediately fatal — unless you count suicide.

  11. BL at 7:06 pm

    What has been accomplished in the past regarding Pain Awareness Month ? How many more Support Groups are there in communities ? How have treatment options been affected ? Whatever affects Pain Awareness Month may have had, it has done nothing to increase adequate pain management and/or options in the medical community. It also has done nothing from the standpoint of what health insurances will cover. Perhaps the target should be major media, if real changes in treatment options are to be made. The national evening news, the major newspapers, etc. The same ones that report how chronic pain patients abuse the pain meds and become addicted to them. But, again, the more people the louder the voices. The problem is the voices about chronic pain patients being addicts is still ringing in their ears. Or, perhaps it is that in reality, the majority of those who suffer from chronic pain are beign adequately treated.

  12. Amber Rose Dullea at 2:40 pm

    I agree that chronic is important but even people who do not have chronic pain may get opioids and that seems to be getting a lot of press lately. Awareness is good but what do we want people to do with it? Raising awareness needs to be coupled with action so that people feel there is something that they can contribute.

  13. BL at 12:11 pm

    If you don’t suffer from chronic pain, you know nothing about it. Because there is medication that helps control the chronic pain, to a greater or lesser degree, it is dismissed. I do wonder how many people are actually having problems receiving adequte treatment for their chronic pain. I believe it is a overwhelming majority. When you look at the small number of people who have signed petitions online as well as online forums, there are not many, compared to the number of Americans who suffer from chronic pain. If the majority of Americans who suffer from chronic pain were not receiving adequate treatment, I believe the signatures on petitions, the number posting in online forums and those involved in things like Chronic Pain Awareness would be much higher than they are.

  14. Dennis Kinch at 10:38 am

    The problem Carol, is one that I saw 10 years ago when I did “the walk.” Advertising. You see, advertising is all about brand recognition. And this is all about promotional campaigns.

    In 2005, the NPF and myself managed to get up about 25 million press hits. This was accomplished with the help of “Bozelle /Jacobs PR firm, professionals who understand how to get recognition. We did tons of press and promotional gigs. We figured it added up to a core of awareness of 50,000 people. This campaign went for a year solid and cost 10’s of thousands yet, once the ball was dropped, it was dropped for good, on all fronts. This is how marketing works. It takes a concerted effort that is always ongoing. It takes money too. We were trying to get national attention. We managed to breach the NY Times online but that was it. We tried like hell to get on a national talk show but to no avail.

    What needs to happen is “the perfect storm” of publicity and promotional stuff with ads nationally, ending on the national talk show circuit. This is why we need to have 1 one, ONE, place where all names of chronic pain patient are registered and that foundation, association, group, whatever, should be funded to undertake an ongoing, national ad campaign. As an example only, the USPain Foundation is a great place because it is owned and managed by patients who think on a national level. This hits 3 or 4 major points in one hit. They should compile the registry of patients and a separate one for supportive doctors and medical groups and eventually Congressmen. Then all “pain” groups should at least be associated with this core foundation so communication is well spread, correctly and on a national level.

    There’s more, but this is the core idea. I’ve been watching this fervently for 10 years now and all I can see is a lot of well meaning groups, over 300 of them online, rudderless, going in their own circles. I’m not trying to be negative here, just realistic. It’s no one’s fault. It just goes with so many people belonging to so many groups, like-minded, but leaderless. Can we hold say a “Rally” where we get patients to “opt-in” and sign up to 1,one,ONE pain group? That would be a good start. Picture AARP but with all chronic pain patients. (There’s actually more of us!)
    Until this happens, I think we are wasting a lot of good intention.