ANGRY but Breathing Easy....

[Thomas3.20.2010]

  Hello! I hope you're having a breathe easy day! 

  Yesterday, I was slapped in the face by a stranger and made to feel like the disrespectful guilty party. Yesterday, I was marginalized and discriminated against. Yesterday, I felt the weight of an uninformed opinion. Although it was just one ignorant person, I know there are more of the same out there, and something must be done.

   "My fear now is that I am going to turn into those people who couch and hack when they see a smoker. I used to hate those people. Matter of fact, if someone made those noises while I was smoking, I sometimes blew a little their way to shut them up. I know, I know.Stupid and immature."

   Not only stupid and immature - discriminatory and stigmatizing! Aside from the utter absurdity and complete ignorance of this comment (at the very place where smoking related illness is bound to happen) it’s flat-out bigotry with no apology. And it hurt.

  Although other marginalized populations have made strides in civil rights and public opinion polls, discrimination (not just stigma) against those with smoking related illnesses still flourishes.

  On the flip side, there has also been research indicating that contact with people with personal recovery stories produces an anti-stigma effect. So if the people you know are open about their COPD, actively working on Nicotine Recovery, and behaving in ways that help you understand, there is a favorable impression.

  Here's a repeat of Our Heroe's Video on TV, JoJo from New York!

  http://www.youtube.com/watch?v=M4s7vmR99is&feature=youtu.be

  So I went searching for help on the internet. That led me to this article:

  http://www.emphysema.net/survey_fact_sheet.htm

  It’s a dilemma: 

  (  1) Stigma prevents some from seeking care. According to a COPD patient survey fielded by KRC Research and sponsored by EFFORTS — Emphysema Foundation for Our Rights to Survive — in partnership with Boehringer Ingelheim Pharmaceuticals Inc., and Pfizer Inc., the very people who need and could benefit most from long term treatment are the less likely to seek it:

   Living with COPD Can Be a Very Emotional Experience:

  ·         Almost 90 percent of COPD patients surveyed thought about their condition daily.  Nearly nine in 10 were concerned about experiencing an exacerbation of their lung condition – a worsening of their symptoms that may require a physician or hospital visit.  An overwhelming number also felt that others believe that COPD patients brought on their lung condition themselves, reinforcing the stigma and guilt that many patients feel.

  ·         More than half of patients (56 percent) reported a severe emotional burden associated with their disease, saying they “very frequently” or “always” felt burdened, overwhelmed, depressed, isolated, defeated, embarrassed or ashamed.  Women and younger patients (40-64) were more likely to report frequently suffering these emotions.

  ·         Overall, nearly one in five patients said their feelings made them uncomfortable and reluctant to get treatment.  Women and younger patients, 40-64, were more likely to feel this way, as were patients suffering most frequently and those very concerned about their condition worsening – groups that normally would be expected to seek help. Severe emotional sufferers, those who responded “very frequently” or “always” feeling these emotions, were more likely than less emotional sufferers to be very concerned about their condition worsening, think there is nothing they can do to control their breathing problems, and feel uncomfortable or reluctant to get treatment.  In addition, severe emotional sufferers were more likely to use short-term medications, often called rescue medications, at least once-a-day, and consider immediate symptom relief important instead of long-term treatments.

   (2) Stigma causes COPD research and development to be a low priority in government budgets:

  #1 Heart Disease

  $1,286,000,000

  #2 Cancer

  $5,671,000,000

  #3 COPD

  $102,000,000

  But stigma is then perpetuated by dealing with those with untreated symptoms (the smoker with the O2 tank.) Stigma also leads to discrimination, which is hurtful and unfair to those who do seek help.

  As important as it is to tell people to talk and be nice to each other, it’s even more important to confront and educate people  like the one I encountered yesterday. Comments like this  remain all too common, and are still accepted by many. We need to protect our most vulnerable Community Members!

  One of the biggest human rights issues of our time is the right of those with smoking related illnesses and disabilities. It starts with effective treatment, and includes support and respectfulness that enable access to care. Without that care, stigma will never really go away. 

  When you see somebody with COPD, please don't turn a blind eye and pretend that they are invisible. We prefer the innocent child who stares at us directly and even asks us direct questions. When you see somebody stigmatizing a COPDer, stand up to the person who's out of line!   You, after all, have been a smoker, too and may if you're very lucky avoid getting COPD in your lifetime - or not! 

  And just for clarification - not all COPDers have smoked! 10% have never had a sickerette in their mouth!