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COPD In America 2019. A person sitting on a cloud shaped like lungs

What’s it Like to Live with COPD? – Results from the 2019 COPD In America Survey

More than 2,000 people with COPD participated in our COPD In America survey to share more about life with the condition. Respondents opened up about their diagnosis journey, their relationships with their healthcare providers, treatment experiences and satisfaction, relationships with family and friends, and the daily struggles of living with COPD. In addition to frustrating symptoms, many respondents struggle with support from others and the stigma that they face when it comes to oxygen wear or past smoking habits.

What’s the most common COPD symptom?

A majority (91%) of respondents reported that their COPD is moderate (46%) or severe (45%). For these people, shortness of breath and fatigue were the most common symptoms experienced. It’s no surprise that these symptoms are also the most frustrating. These symptoms interfere with daily activities and occur often even with proper treatment and medications for COPD.

Shortness of breath and fatigue are the most common and most frustrating symptoms reported.

Other conditions and comorbidities occur with COPD

In addition to a COPD diagnosis, most (94%) also experience other conditions and comorbidities that bring about a new set of daily challenges. These conditions may occur as a result of COPD, in addition to COPD, or due to similar risk factors that cause COPD like smoking.

Other conditions are hypertension, allergies, respiratory infections, arthritis, high cholesterol, anxiety, GERD & pneumonia.

Support and social life with COPD

Although 2/3 of patients have someone involved in their care, there is still a lack of support for many. Over 20% expressed a need for emotional support, help with household duties, and finding coping strategies. Additionally, COPD can be very lonely and over half of the respondents reported that they feel less social because of the condition.

A lonely person with the quote “People don’t invite me to events because I become very breathless. I think it scares them.”

Stigma and judgement around the condition and oxygen use

Oxygen therapy or supplemental oxygen delivers an extra supply of oxygen into the body to help improve symptoms of COPD. It is a common treatment for COPD, yet many are judged and stigmatized by the mere sight of it. Additionally, there are challenges when it comes to running errands, traveling, or attending social events with oxygen. Bracing those challenges contributes to the loneliness and isolation that so many people with COPD may feel.

Statistics for oxygen use & an alien wearing oxygen with the quote “When I wear my oxygen in public, I feel like an alien.”

An additional source of stigma from smoking

Smoking is the number one risk factor for COPD, but not everyone who has COPD is a former smoker. For both smokers and non-smokers alike, there is a stigma and blame that comes with a COPD diagnosis. Patients express that outsiders tend to feel they brought COPD onto themselves and even say ‘I told you so’ to those suffering from this condition. This is not helpful for those with COPD who need support from the closest people in their lives.

Image describing the stigma around smoking with quotes about stigma from respondents who did and did not smoke previously.

The COPD in America 2019 survey was conducted online from April through July of 2019. The 2,007 patients who completed the survey have been diagnosed with COPD; chronic obstructive pulmonary disease, emphysema, or chronic bronchitis.

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

  • BeverlyDeMarco
    2 weeks ago

    Hi Hoppyness, I AGREE WITH YOU ALSO ABOUT NOT KNOWING WHAT SMOKING DOES TO YOUR HEALTH AND COPD, THEIR WERE NO WARNINGS ON THE PACK OF CIGARETTE S YEARS AGO WHEN WE WERE TEENAGERS. SORRY I EVER PICKED UP A CIGARETTE, I AM NOW IN END STAGE SO DONT KNOW HOW MUCH TIME I HAVE LEFT?

  • Terryte1
    3 months ago

    I never smoked. Had a wheezing noise, pulmonologist did breathing test, I was diagnosed with cppd. I couldn’t afford the breo , so I’musing the Ventolin albuterol inhaler. It’s scary. I am short of breath Thanks for sharing

  • Leon Lebowitz, BA, RRT moderator
    3 months ago

    Hi Terrytel, and thanks for your post. My colleague, Lyn, has offered good information (below) in response to your concerns.
    Besides her suggestions, I thought you might also find it helpful to look over these two articles.
    First, this one on the medication you mentioned, Breo: https://copd.net/treatment/medication-overview/medications/breo-ellipta/.
    And second, this article, which addresses the cost of Breo, and how to take advantage of savings that are offered by the manufacturer: https://copd.net/living/afford-medicine-ideas/.
    I do hope you find them to be helpful.
    Wishing you well,
    Leon (site moderator)

  • Lyn Harper, RRT moderator
    3 months ago

    Hi Terrytel – A new diagnosis is always scary; especially when we weren’t expecting it. But, you’ve come to the right place to get as much information as you can about COPD. We’re here to help you. Please be sure and check out the website for Breo Ellipta, as they have coupons and savings programs that allow you to get the medication at a reduced cost, sometimes even free. It’s under the savings/samples tab.
    I hope that helps.
    Lyn (site moderator)

  • Pooche
    4 months ago

    Pooche115. You know who treat me different is my family, at times I can’t get them to prepare a meal for me. They know I can not go in the kitchen and do it my self, because of the oxygen i wear 24/7 every day and night. On top of the COPD i have arthritic in both knees, and i fell and broke the right knee nothing could be done about it because it was the one I the knee replacement surgery years ago, so I’m in a wheelchair now, what luck I got.

  • Leon Lebowitz, BA, RRT moderator
    4 months ago

    Hi again, Pooche, and thanks for this post. I’m sorry to hear you’re not receiving the type of support you’d like from your family. Do you think it would help if you shared some of the information about COPD with them? That might provide them with more of an understanding of what it’s like for you with COPD. Warm regards, Leon (site moderator)

  • HOPPYNESS
    4 months ago

    When someone tries to shame me for having been a smoker, I reply, “yes, I am sorry that I have COPD, but nicotine allowed me to be productive and even keeled for many years. Had I realized earlier that I was self-medicating with cigarettes, perhaps I could have gotten help and quit smoking sooner.

  • Leon Lebowitz, BA, RRT moderator
    4 months ago

    Hi HOPPYNESS, and thanks for joining in the conversation here responding to our 2019 survey results. We appreciate you sharing your thoughts with the community. All the best, Leon (site moderator)

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