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Coping with a serious illness

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An operation to replace a patient’s diseased lungs with lungs from a donor
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The worsening of a disease/condition over time

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A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

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A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

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A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

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A physician specialising in the management of diseases of the digestive system

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An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

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When first receiving a diagnosis of IPF, your treatment team may describe it as being terminal. This means that IPF can limit the length of your life. Receiving this news affects everyone differently and it’s important to remember that the way you react may not be the same as your family members or friends.

 

 

Your initial feelings

 

There is no right or wrong way to respond to the news that you have a terminal illness. The news can be shocking and difficult to accept. Some people feel numb or go silent, while others feel angry or scared for what the future holds. Everybody is different and reacts in their own way.

 

Give yourself the time to take in what is happening. Some people would rather be on their own, but others would rather spend time with family and friends. If you don’t feel like talking straight away, you don’t have to.

 

As hard as it can be, try not to push your emotions aside completely. At some point, it’s better to express how you feel if you can manage it, even if it's uncomfortable and hard to cope with.

 

 

Am I alone in how I feel about my diagnosis?

 

Although IPF is rare, you are not alone. There are other patients with IPF, like you, all over the world, who are working through the emotional and mental wellbeing challenges of living with IPF. In fact, anywhere from 10-60 people in every 100,000 people are diagnosed with IPF every year in Europe and North America.1,2

Quote: Up to 3 million people worldwide have IPF
An operation to replace a patient’s diseased lungs with lungs from a donor
View in glossary

The worsening of a disease/condition over time

View in glossary

A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

View in glossary

A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

View in glossary

A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

View in glossary

A physician specialising in the management of diseases of the digestive system

View in glossary

An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

View in glossary

Being diagnosed with IPF can lead to a range of emotions

 

An online poll was conducted by Boehringer Ingelheim to learn more about the experiences and emotions of people affected by IPF.3 The results of this global poll and other studies show that IPF leads to a complicated variety of emotions.3,4

 

When asked about their plans over the next year many patients expressed a positive view; some said they would ‘enjoy time with family’ and others said they ‘would like to travel or go on holiday’.3

 

Some of the feelings patients experienced included  confusion about the diagnosis, concerns about loss of independence and worrying about the progression of IPF.3 Although these negative impressions can be overwhelming at times, understanding them can be useful to help build coping methods for future challenges.4 It is important that you seek as much support as possible to help you through these challenges.

 

Patient support groups are one resource that can help you to cope with the negative feelings of IPF. The importance of IPF patient support groups was reflected in the poll, with a number of patients saying that groups 'made them feel less isolated and provided access to important information’.3

 

It is normal for a diagnosis of IPF to lead to feelings of physical and emotional exhaustion, which can sometimes make it difficult to find the strength to cope with the disease.4,5 Participating in a patient support group offers an opportunity to get together with others who are facing similar experiences and may help you to better manage the challenges of living with IPF.6

As far as I’m concerned, life doesn’t end with this…. We still live a good life. We dine out, we travel to hotels, we enjoy life, and we socialise generally. I’d say don’t give up, don’t give up

An operation to replace a patient’s diseased lungs with lungs from a donor
View in glossary

The worsening of a disease/condition over time

View in glossary

A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

View in glossary

A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

View in glossary

A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

View in glossary

A physician specialising in the management of diseases of the digestive system

View in glossary

An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

View in glossary

Feelings of denial when living with IPF

 

Denial happens when someone starts to behave as though they are fine even though they are not. For some people, denial is way of coping with difficult news. It is common to want to avoid thinking about or discussing distressing details of your IPF.

 

Being in denial and ignoring the condition can make it harder to plan for the future, including planning the best care or making the right financial decisions. People in denial about their IPF can sometimes push themselves to do things they’re no longer capable of and refuse help. This can be dangerous and pose serious risks that can make their IPF worse.

 

Some things to be wary of if you or someone close to you is in denial about their IPF:

  • Stopping medication or trying alternative treatments that may be ineffective or even harmful
  • Avoiding or ignoring important information about care planning
  • Not discussing doctor’s visits or insisting on attending appointments alone
  • Missed or cancelled appointments
  • Refusing to track how they’re feeling

It’s important that you come to terms with your diagnosis in your own time, but it can be difficult for those helping with your care to see you avoid treatment. If you are a patient, keep open channels of communication with your friends, family and treatment team.

 

If you are caring for someone with IPF who is making choices that you think may harm their health, speak to their treatment team about your concerns.

 

Staying hopeful

 

Maintaining a sense of hope for the future will help you focus on looking after your physical and mental wellbeing. This hope could be that you can visit special places, be there for special occasions or enjoy time with your family and friends.  

 

Try to share your hopes with other people, as they can help you to fulfil them. Many people benefit from the hope, comfort, friendship and support that family, friends and patient support groups can provide as they manage the day-to-day challenges of living with IPF.

 

Please visit the community and support groups page to learn more about organisations and resources that can help you on your journey through life with IPF.

Woman smiling in a café
Community and support groups

Support groups connect people with IPF together, to help share experiences about managing their condition

Key Takeaways

  • Learning you have a serious illness is difficult and affects everyone differently. There is no right or wrong way to react to the news

  • You are not alone in your diagnosis: IPF affects up to 3 million people worldwide

  • Speaking to people and attending patient support groups can help you come to terms with your condition

Show references Hide references
  1. 1.
    1. Data on file. Boehringer Ingelheim. Worldwide prevalence. 2016.
  2. 2.
    1. Martinez FJ, et al. Idiopathic pulmonary fibrosis. Nature Reviews Disease Primers; 2017; 3:17074.
  3. 3.
    1. Data on file. Boehringer Ingelheim International GmbH. ‘When I think of IPF, I think of...’ Patient Poll. 2015.
  4. 4.
    1. Duck A, et al. Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis. J Adv Nurs 2015; 71:1055-1065.
  5. 5.

    Russell AM. et al. Qualitative European survey of patients with idiopathic pulmonary fibrosis: patients’ perspectives of the disease and treatment. BMC Pulm Med 2016; 16:10.

  6. 6.

    Pulmonary Fibrosis Foundation. Patient Information Guide

Mental wellbeing
Coping with a serious illness
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At the start I was utterly depressed. Now it's been five years and it has not spread too much, it has developed gently. I tell myself why not another 20 years like that, or more?

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