In this section, I am going to try to explain what it is like living with COPD. The first thing I would like to say however, is that if you are diagnosed with COPD at whatever stage in its development, if you are a smoker you must stop. I can’t emphasise this enough, if you don’t stop you are in for real trouble, the disease will progress rapidly and take your life.
One thing Doctors fail to tell patients is that once you stop smoking the future deterioration of your lungs will only be, in most cases, like that of a non-smoker. Everyone’s lungs deteriorate with age anyway, stopping smoking will halt the fast deterioration witnessed in smokers.
Because Doctors do not tell patients this, many patients carry on smoking with this disease thinking, what’s the point, and can you blame them? Its tragic.
Its very difficult to explain what it is like living with COPD, I can only say its difficult, frustrating and at times embarrassing. The lady in the following video explains it very well and if you readers have any comments at all please leave them at the bottom of the page.
I have found a lot of information that tries to explain what it is like to live with this illness and hints and tips on how to self manage, some of the information included in this post, which is in fact Global, comes from a study carried out by an American company called Novartis. The ‘COPD: Life is Calling’ initiative was developed and made available for patients wanting more from their lives. It is interesting because the report is based on real patients’ personal stories, from the UK and America.
‘If you get it wrong at the beginning…then you’re on the highway to the wrong regime.’
Prof David Price, University of Aberdeen, UK
SO WHAT IS IT REALLY LIKE LIVING WITH THIS ILLNESS?
A short film that show’s what it can be like with COPD
Imagine gasping for breath after taking just a few steps. Or not being able to play with your grandchildren for fear you could pass out. Think what it must be like having to plan every minute of your trip in advance mentally to the shops, to take into account stair cases, rest stops, ease of toilet facilities, convenient parking spaces and on top of this, trying to make yourself not look too out of breath, you don’t want to draw attention to yourself too much, as this can be embarrassing. All this can contribute to a very stressful trip out. This is the daily reality for thousands of people with chronic obstructive pulmonary disease (COPD), a chronic and life-threatening respiratory condition.
One very sad but illuminating thing that happened last year was the death of Star Trek Leonard Nimoy due to COPD. His daughter, has used his demise to publicise this illness as he wanted it to be.
“Star Trek icon Leonard Nimoy’s death in February put the spotlight on COPD, or Chronic Obstructive Pulmonary Disease, the illness that claimed the actor’s life. Most people aren’t aware of the condition, even though it’s one of the most-prevalent lung diseases diagnosed today and despite the fact that it ranks as the third most-common cause of death in America. Nimoy disclosed his diagnosis in 2014 and spent his remaining days talking and tweeting about the illness, revealing how his years of smoking caused it, and imploring anyone who smoked to do the logical thing and quit. More about this can be found on his web site Documentary about Star Trek’s Leonard Nimoy.”
By 2030, COPD is set to become the third leading cause of death globally, exceeded only by stroke and heart disease. Although smoking is one of the major risk factors for COPD, the reality is that only one in five smokers will develop the condition, (this figure is contradicted in many reports the figure seems to gravitate between 20 and 50%). Although considered an ‘old person’s’ disease, COPD also affects younger people, such as those in their 40’s. COPD is already a serious global health epidemic with a significant impact on health services and the economy. Many people are diagnosed late leading to worsening symptoms – sometimes even hospitalisation – which places a strain on health services, and the taxpayer due to the loss of working days. The disease has a devastating impact on patients by damaging the tubes that carry air in and out of the lungs. This leads to conditions which make it hard for sufferers to breathe such as chronic bronchitis, emphysema and chronic obstructive airways disease.
The association with smoking means that patients often feel a sense of guilt, and they also experience stigma because of the link with cigarettes. Without appropriate management, COPD negatively affects not only quality of life, but also has a significant impact on the lives of carers, friends and families. Many people remain symptomatic despite available treatments. A new approach is needed to support people with COPD and others affected by this devastating condition. The right support and motivational support can bring huge benefits for patients. Take for example Dee Schofield, a mother-of-six who avoided going upstairs for fear of ending up breathless. Today, Dee is enjoying life again and recently completed an eight-mile walk for charity thanks to the support of her consultant. Says Dee: ‘It’s (COPD) not my identity. I’m still me, I just happen to have COPD.’
Washing, getting dressed, walking up stairs – these are daily activities most people take for granted. Yet such activities often pose a great challenge for people with COPD. The breathing difficulties they experience when physically exerting themselves can lead to panic and embarrassment and can mean they avoid altogether activities that trigger feelings of breathlessness. This avoidance can lead to a downward spiral, making physical activity increasingly difficult and frightening.
By limiting their horizons, people with COPD can become socially isolated, which in turn can lead to depression. Friends may fall by the wayside, believing that their once active friend no longer wants to spend time with them – especially if he or she fails to confide in them about the condition (which is common). But even when they do people don’t understand it anyway. There’s an emotional burden too – some people with COPD don’t want to tell their boss or their wider family for fear of being judged.
The growth of the digital environment and the availability of social media groups and forums offer another avenue of support for people with COPD. However whilst some people with COPD find online communities helpful and supportive, others find them a ‘turn-off.’ Our interviews with patients reveal that people who share their experiences on such sites can appear ‘needy’ or ‘like victims’ on occasion. This is totally wrong, most people who join the COPD sites are feeling scared and alone and any form of communication is great for them and can really make a positive difference to their world. Through talking to people who have this illness and have found strategies to help, it can widen their horizons and give those who feel they have lost all hope, a new hope for the future!
These are just some of the comments made by some COPD sufferers –
‘I just thought ‘I’ve got a smoker’s cough…There’s no point going to the doctor…because it’s my own fault.’ Dee Schofield
‘Humans have to achieve. If we don’t have goals…you will spiral downwards into depression which is as much a killer as your COPD will be.’ Pamela Sutherland
‘Stairs are a really, really good way of getting the kind of activity that you need…you can shout at The Archers (BBC radio program) while you’re walking up and down.’ Paul Towning
‘I find it very difficult to slow down….and that, in turn, leads to breathlessness.’ Ian Venamore
‘I’m a Ferrari with no wheels. My mind works as a Ferrari but with bicycle wheels.’ Luisa Branco
‘The better informed he (the patient) is, the better he can manage his disease.’ Jose Albino
John Walsh, co-founder and president of the COPD Foundation says ‘Don’t be afraid to ask for somebody to listen’. In his experience, people find it hard to share their COPD stories. John is both advocate and patient – he has an inherited disease that causes genetic COPD in adults. His mother died of onset emphysema aged 46; his twin brother Freddy has COPD as does one of his sisters. For five years, doctors believed John had asthma until he was correctly diagnosed with COPD. John travels regularly because of his job and daily activities such as carrying a suitcase can leave him short of breath if he is in a rush. At times, the reaction from others – the desire to help – can make him feel ‘disabled’. However, by managing his condition well with daily activity and planning enough time to get from A to B, he travels 252 days a year and only needs to use oxygen whilst in flight. Ten years ago, it was a different story – John dreaded walking from the gate through passport control at Heathrow airport because he’d be ‘completely out of breath.’ Today, he can complete the task without stopping. His message to others with COPD is to get up and move, ‘do more tomorrow than you did today’, ‘take action today, breathe better tomorrow.’ GOAL: John takes 10,000 steps before even starting his day and challenges himself to take 25,000 steps a day in total. Guilt and denial are other significant emotional barriers to overcome for people with COPD. Smokers may feel they are ‘to blame’ for their symptoms so don’t feel compelled to see their doctor – or their doctor simply doesn’t recognise these symptoms to be indicative of COPD and their diagnosis is delayed.
Luisa Branco explains her experience with COPD
‘It’s like being underwater diving and someone pulls off the oxygen bottle,’ is how 63-year-old Luisa Branco describes a COPD exacerbation. Diagnosed with COPD in 2001, she has been hospitalised twice so knows first-hand how limiting COPD can be but, as she says, ‘life goes on.’
Her doctor has been instrumental in helping her learn how to conserve energy when doing everyday tasks. She’s happy if it takes an hour to get up, shower and make her bed at her home in Lisbon, in Portugal, although some days this can take much longer which can leave her frustrated. Luisa, who worked as a psychologist in an institution for people with disabilities, says: ‘It’s like The Tortoise and Hare fable – I’ll make it but at a slower pace.’ When Luisa was first diagnosed, pulmonary rehab wasn’t available at the hospital where she received treatment but one has opened subsequently so there is more support for people with COPD. For Luisa, her condition is a learning process, ‘a constant fight to keep my mind sane when the body does not want to obey.’ One of the biggest challenges for her has been using oxygen and she has been involved in writing a book about what it’s like to travel in Europe with oxygen such as the charges made by airlines. Luisa did smoke before her diagnosis, a habit she says was ‘socially accepted’ when she started. Her aim is to prevent children using tobacco and is a member of a patient support group which goes into schools to talk about the health risks of smoking. They use a device which children put in their noses to restrict their breathing and this gives a first-hand experience of what COPD is like.
Her advice to patients with COPD is ‘It’s hard but not desperately hard and…the associations are there exactly to help people succeed together in overcoming the day-to-day difficulties.’
People with COPD revealed that they had limited understanding or knowledge about ‘COPD’ before their diagnosis. Coming to terms with the diagnosis can leave some in denial whilst others experience feelings of anger or hopelessness. Some continue to smoke because they are unable to overcome their addiction. With the right support though, people with COPD can be better informed so they become more active thereby improving their lung function and breathing. Many of the people we spoke to had benefited from setting and reaching achievable goals through pulmonary rehabilitation (PR), a scheme offered in hospitals or the community to help achieve optimum breathing. Those who enjoy fulfilling lives have had to accept their limitations – they know they can no longer scuba dive or climb Machu Picchu, but are still able to travel and enjoy hobbies and interests that they had before diagnosis.
The message that came across strongly through the interviews was that goals are important, but must be realistic with the person with COPD always taking the lead. Also the right support and motivational support can bring huge benefits for patients. Take for example Dee Schofield, a mother-of-six who avoided going upstairs for fear of ending up breathless. Today, Dee is enjoying life again and recently completed an eight-mile walk for charity thanks to the support of her consultant. Says Dee: ‘It’s (COPD) not my identity. I’m still me, I just happen to have COPD.’
Novartis undertook a series of interviews with people with COPD, family members, healthcare professionals, COPD patient organisations and the media. From these insights, desk research and a long heritage in this disease area, the COPD: Life is Calling initiative was developed and made available for patients wanting more from their lives. Better understanding leading to a new approach.
All of the above information should not be taken as medical advice. COPD patients should discuss their condition with a healthcare provider before making treatment decisions or health-related changes.