Stop "Chronic Pain Stigma" in Med Commun...

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Author: arnsmom

Started: February 22, 2009, 6:59:08 pm

Target: Stop the "stigma" placed on Chronic Pain Sufferers

Category: Civil & Human Rights

Supporters:

Goal:

100,000

Goal Progress:

Status

Active

Stigma: A Fact of Life for Those with Chronic Pain

"It's easy to be paranoid when you hurt like hell and you're at the mercy of the health care system." States Kellie Hillis of Pasco, Wa.

Stigma, as defined by The Random House Dictionary as "a blemish on one's record or reputation is a pervasive fact of life for people with chronic pain".

The most wide-spread misconception about chronic pain is that it results from a psychological disturbance. Other common misconceptions are that those with chronic pain should be able to tolerate pain better as time goes on, that they are using pain to obtain narcotics, and that they exaggerate their pain for secondary gains, that is, for sympathy or financial gain.

The impact of stigma on chronic pain sufferers is devastating. Stigma is a magnifier of pain. It boils down to one word...discrimination.

Chronic pain often presents sufferers with a real "catch 22" dilemma. If they talk about their pain, they risk being perceived and labeled as hypochondriacs, or even worse,fakers or malingerers. On the other hand, if they hide their pain, others don't believe the pain is significant. It is enough to tax the patience of the most stoic person.

Health care professionals who see pain patients every day agree emphatically that stigma makes an already bad situation worse. Patients daily suffer from guilt, demoralization, and depression due to the negative perceptions of others. Others feel you should pull yourself up by your bootstraps. Don't believe that, though. You can't just talk yourself out of it.

Chronic pain patients have what can be called the "Job" syndrome. "People remember Job's patience," Kellie Hills read in a report. "They feel they must have sinned. They ask themselves, 'What did I do wrong for these bad things to happen?"'

Chronic pain patients report a real sense of frustration about the public's perception of chronic pain. "You look fine, you must feel wonderful," others say. "Pain is something you wear on the inside, not on the outside. " It has been observed that men tend to emphasize the way chronic pain affects their work, while women tend to focus on the way it affects their relationships.

Stigma can be manifested in various ways by raised eyebrows at work, by friends asking "Shouldn't you be feeling better by now?", and even by family members looking the other way or minimizing the problem.

Societal biases are also apparent. Theatres, restaurants, and the workplace are all designed for pain free people, despite the staggering statistics that as many as one in three Americans suffers from chronic pain.

Indeed, people with easily visible proof of pain such as swollen joints, wheelchairs, canes or neck braces, often report that this tangible evidence of pain offers them validation in the eyes of others. Pain sufferers emphasize that a major factor behind the stigma is the invisible nature of most chronic pain.

"You don't look like you're in pain," people tell Kellie Hillis, 42, of Pasco, WA. She asks them, "What does pain look like?" She has had chronic intactable headach since January 2008 which appeared out of nowhere but has affected her life and those around her with a horrible sense of helplessness and discrimination which has caused a lack of trust in the medical community around her. "I can't help but feel that if I went in with my life hanging by a thread, they would cut the strings due to the stigma they have already placed on me".

Where Does Stigma Come From?

Stigma arises from external sources such as health care professionals, family and friends, the public at large, government agencies and insurance companies, and even from other chronic pain sufferers. Stigma can also arise from within, with pain sufferers often experiencing guilt and blaming themselves for their pain.

Health care professionals often present formidable psychological obstacles to chronic pain patients. They want their treatments to produce results and when this doesn't happen, some blame the patient believing that the patient hasn't followed instructions properly, is receiving secondary gains from being in pain, or is simply imagining the pain.

Even when doctors acknowledge that chronic pain is not rooted in psychological disturbance, they may focus too much on helping patients accept their pain and not enough on finding ways to alleviate it. Sufferers wish doctors would spend at least as much time ruling out additional treatment possibilities as they do in telling patients they just have to learn to live with the pain. Many treatment options are available today and more will be available tomorrow. We cannot stop looking for causes and new treatment approaches.

Most pain patients report that family members especially spouses, feel a sense of frustration that they can't do more to alleviate the pain.

The health care system has failed chronic pain patients. "Incentives in the system tend to make people with chronic pain worse, not better,". "The system is designed for acute care only and doesn't adequately address the needs of patients with ongoing health problems." This can be seen in insurance plans where surgery is covered but pain management programs are not.

Stigma against those with chronic pain can also lead to cancelled life and health insurance policies, not to mention insurance applications that are turned down.

Another reason for the stigma comes from the faulty reasoning that chronic pain must be due to character weakness or psychiatric illness. "Come on nothing can hurt that bad, it must be in your head", the thinking goes.

Some Good News

Fortunately, chronic pain has been gaining increasing public attention and media visibility in recent months. There is reason to be optimistic that the stigma of chronic pain will decrease as the public learns more about chronic pain and recognizes the vast numbers of sufferers in their midst.

The professional literature, too, is showing signs of change in the right direction. A nursing textbook on pain, for example, contains a thorough chapter on chronic pain which highlights and dispels common myths and misconceptions about pain patients [McCaffery and Beebe, 1989]. And more and more articles in the professional journals are addressing the issue of negative bias and stereotyping of chronic pain patients.

Pain patients are speaking out more publicly and getting more publicity. On a local level, they are banding together in support groups to fortify each other. It is only a matter of time until this expanding vitality impacts the public consciousness to squelch the stigma of chronic pain.