Man whose head is a carton of cigarette waving to a woman who ignores him

Reversing the Stigma of COPD

Are you one of the many COPD patients who are afraid to leave their own home? Getting out of your home can be a challenge both physically and mentally. It’s hard enough dealing with the daily breathlessness, but for many dealing with the judgement from the community can be just too much!

COPD stigma

The sense of “you did this to yourself” is very common in the general public. I have also struck this sentiment in the healthcare professional community as well. Many have the attitude, if you are a smoker and have COPD then what did you expect! With this attitude you can start to understand why COPD is such a poorly funded disease.

The question is how do we change the way some people think of COPD? I was recently told of some doctors in my local hospital system who believed COPD patients don’t deserve the same level of care as other patients. I have personally been told, I deserved my disease because I used to smoke.

We don’t deserve this disease

But here’s the question I like to fire back at people who believe we deserve our disease – “does everyone who makes poor lifestyle choices deserve their disease?” With so many chronic diseases caused by poor lifestyle choices, the “you deserve it mentality” makes no sense at all.

For example – if you have type 2 diabetes from a life of poor dietary choices, do you deserve to have diabetes? I think a more relevant question to ask people with COPD is what made you take up smoking? People take up smoking for a number of reasons, one of the main reasons I hear is stressful situations. In this scenario maybe, stress was how a patient ended up with COPD?

Don’t get me wrong, I’m not making excuses, I smoked, and the result was COPD! I remember the first puff I ever had on a cigarette with a group of friends. It was horrible, disgusting and I did not enjoy one bit of it. However, I was determined not to look uncool in front of my friends and pretended to enjoy. This became a habit until I actually started to enjoy smoking.

Having a different perception

I guess my point is maybe if people looked at what led a person to take up smoking rather than the act of smoking, they would have a different perception of COPD.

It’s important for COPD patients to come to terms with their disease and to be willing to change people’s perception. Taking responsibility for choices and explaining how they had come to make those choices are important! If we chose to hide away, nothing will change!

It will take time to change some people’s perception of COPD but in the long run patients will benefit. As a COPD advocate, I invite people to ask me about my disease. Regardless of their motive when asking questions about COPD it gives me a chance to explain my disease, how I contracted it and how I manage it.

It also gives me a chance to explain how underfunded COPD research is and regardless of a person’s opinion on COPD, more funding means better treatments, more education and less hospital admissions. Together this would see less burden on healthcare systems, a win for all the community.

Embrace your COPD, don’t hide it, get out and explain it, so people realise stigma helps nobody!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (12)
  • kmcnamara86
    4 hours ago

    I am so glad you wrote this Russell. I have COPD. Yes, I smoked, but not heavily and quit when I was 30. I did, however, also work around chemicals for 30 years….and that is probably what caused mine. This disease is not always from smoking.

  • Lyn Harper, RRT moderator
    1 hour ago

    I agree, kmcnamara86! I wish more people would read this article. You’re a classic example of someone that probably ended up with COPD, not due to smoking, but rather occupational exposure.
    Thank you for sharing that with us.
    -Lyn (site moderator)

  • Leon Lebowitz, BA, RRT moderator
    2 hours ago

    Hi kmcnamara86 and thanks for your post. There is no question that there are other causes and risk factors besides smoking, I thought this article might provide you with some additional insight: https://copd.net/basics/causes-risk-factors/. I hope you find it to be helpful.
    Leon (site moderator)

  • deebea
    23 hours ago

    People saying we deserve COPD is like saying an athlete who is paralyzed or killed while participating in his sport deserves to be paralyzed or dead. Many of us started smoking so many years ago, we had no idea it was dangerous.

  • Leon Lebowitz, BA, RRT moderator
    4 hours ago

    Hi deebea and thanks for your comment. I’m sure you remember a time when smoking was considered to be ‘fashionable’! I remember advertisements in which doctors, athletes, and Hollywood stars were shown smoking, too! If only we knew then what we know now!!
    We hear you!
    Leon (site moderator)

  • GrandmaLin
    23 hours ago

    Hi, I accept my smoking brought on copd but have read that elderly people get copd simply because their lungs wear out and they’re old. Are they held responsible and found guilty simply for getting old as we all will eventually? Should they get substandard care for their part in aging? Not everyone that smoked gets copd any more than anyone who worked around asbestos gets cancer. Think the docs are jumping to conclusions without all the facts. Think maybe they feel the need to blame someone for their inability to understand and heal this disease just like I want to blame someone, anyone, for my stupid choice to smoke. We are all imperfect human beings trying to make sense of our part in this disease. Just my opinion.

  • Baron
    23 hours ago

    Thank you for posting this. Everything you have said applies equally to the UK, so I suppose it’s pretty universal. You use the example of diabetes but I would add cancer and heart disease into the mix, both diseases can be (and usually are) acquired through poor early lifestyle choices. Suffering the deaded cancer is somehow, more ‘noble’. If you suffer a liver disease issue even, this is hailed as almost heroic as you drank your way to oblivion and hang the consequences. Another thing that galls is, you will never become a ‘non-smoker’ if you once smoked and quit. People are quick to hang the ‘former smoker’ millstone from your neck so you can never be free of the stigma. But you are quite right, all of this prevents further research into COPD and for ‘research’ read cash. Big Pharma is making a small bomb out of steroids and inhalers why would they want to see a better treatment? Once again, thank you for posting, what might be shocking to some, but is the painful truth for others.

  • horndust 2
    23 hours ago

    i have very severe copd. I blame my parents for my condition. I was subjected to passive smoking from the day i was born. they chain smoked throughout their lives. I started smoking when i was told by my parents it would make me feel relaxed and was given a “woodbine” at 16. In those days it was not considered dangerous. We weren’t told what a cigarette contained. I gave up smoking 20 years ago. I am now 77 years old and have to use oxygen all night and day. copd has ruined my life but i am thankful that my 4 children have seen how i have suffered and they do not smoke. I made the wrong choice when i was too young to understand but today there is no excuse for people either starting or continuing to smoke. The people who are critical of people who have this disease and dont think we should be helped, should understand older patients sometimes who copied their elders and felt it was expected that we followed in their footsteps are the ones who should be blamed as they were supposed to take care of us not push the poison on to us, then leave us to suffer the consequences of their actions.

  • alpine122
    4 days ago

    I have COPD and I have never smoked. My doctor isn’t sure how I got. When I tell anyone I have COPD they just assume I was or still smoke.

  • Leon Lebowitz, BA, RRT moderator
    4 days ago

    Hi alpine122 and thanks for your post. It’s difficult to understand why and how a doctor could tell you he doesn’t know the causes and risk factors associated with COPD (other than smoking). It is a common assumption, that smoking is the only reason someone would develop COPD. It’s what the COPD community is up against much of the time. I thought this article (on causes and risk factors) might provide you with some additional insight: https://copd.net/basics/causes-risk-factors/. I do hope you find it to be helpful. All the best, Leon (site moderator)

  • sardonicus
    4 days ago

    I cant understand how a doctor could be so cruel until last Jan. when I saw my first pulmonary specialist. She had no sympathy or compassion and more or less said I deserved what I got. She was downright cruel. She told me “lung cancer is just around the corner”. She was also insulting. My sister who came in with me for moral support and has never smoked was told “well its pretty obvious your the one who got the brains”! Needless to say I wont be seeing her again. I have an appointment with another one, but its not till April.

  • Leon Lebowitz, BA, RRT moderator
    4 days ago

    Hi sardonicus and thanks for this post. Sorry you went through this with a physician who lacked compassion and was downright rude, besides providing you with a tremendous disservice. Thankfully, you have the ability to see another physician who hopefully, will be more knowledgeable and understanding about your situation. Please do keep us posted once you’ve seen the new physician in April. All the best, Leon (site moderator)

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