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Making Sense of the Illness

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Making Sense of an Idiopathic Pulmonary Fibrosis Diagnonis

The journey to a diagnosis of idiopathic pulmonary fibrosis (IPF) is usually long, confusing, and frustrating. A diagnosis of IPF is the end of that journey, which can bring great relief to patients and caregivers. Finally, there is a name for what is wrong. Finally, there is something to tell worried family members and friends. Finally, it is time to start getting answers. 

However, the diagnosis of IPF is also the beginning of a new journey. Now it is time to make sense of the condition and what it means to have it. This journey can also be confusing, and at times quite difficult and distressing. Yet, with the right support, patients can and do gain a sense of acceptance and hope.

After a diagnosis of IPF, most patients and caregivers describe having three key areas in which support is needed: informational, emotional, and logistical.

Informational Needs After an IPF Diagnosis

Immediately after the IPF diagnosis, patients and caregivers have many questions:

Although it should be easy to get accurate, easy-to-understand information about IPF, the reality is that this process is usually difficult. 

Some patients and caregivers say that their doctors answered all their questions.1-3 They felt empowered by asking for and receiving just the amount of information that they are ready to hear. Other patients and caregivers felt that their doctors give them too much information too quickly, or not enough information at all. This had some people feeling frightened, hopeless, frustrated, or overwhelmed.

Patients Speak About Receiving Their Diagnosis2-3

“And [the doctor] didn't tell me what it was…but reading upside down on his pad I read PF and I came to the view that that stood for pulmonary fibrosis, so when I came home and googled pulmonary fibrosis which said I’d be dead in five years…I guess it was a bit of a shock.”

“They gave me a booklet and I wish I didn’t read it.”

“Everybody was very good, efficient and I got my diagnosis, and everybody that needed to, gave me the information, and I wouldn't change anything.”

Many patients and caregivers look for information on the internet. Unfortunately, much of the information on the internet about IPF is inaccurate or outdated. A recent study of the first 200 website hits on a search for “idiopathic pulmonary fibrosis” on Google, Yahoo, and Bing found that misinformation was common. About one-third of all the sites recommended treatments that are known to be harmful to people with IPF. About half of all the sites suggested treatments that are unproven or have unknown effects in IPF.4

Another study looked at YouTube videos about IPF.The first 200 videos that resulted from a search on “idiopathic pulmonary fibrosis” were analyzed. The study found that, on average, most videos talked about less than a quarter of the information that is considered key to understanding the condition. 

Support groups, both online and in person, can be a source of information from people who have more experience living with IPF. It is important to keep in mind, though, that other people with IPF may not have any better information than you have.

Where can I look for reliable IPF information on the internet?

At ILD Collaborative, we have put together useful articles and webinars on our Resourcespage.

Other reliable sources include:

The Shock of the Diagnosis

A diagnosis of IPF is an overwhelming shock.Both patients and caregivers often describe the time after diagnosis as emotionally overwhelming. This is a time of grief for most people living with IPF. 

Patients Speak About the Shock of Diagnosis1-3

“It came as a little bit of a shock. It affected me.”

“Very shocked. Really upset at the time.”

“I feel picked on, I feel…I haven’t smoked for all these years, I don’t drink, I’m not overly fat, why is this happening to me?”

“I went into a depression actually, not knowing what was happening with me.”

Grief is a complicated internal state that causes many emotions, feelings, thoughts, and reactions. It does not only happen when someone close to us dies. When a person receives a diagnosis of a terminal condition, that person and surrounding loved ones nearly always grieve. 

According to the American Academy of Family Physicians, grief can look and feel different for different people. Some peoples’ experiences include6:

  • Feelings: Anger, anxiety, blame, confusion, denial, depression, fear, guilt, helplessness, irritability, loneliness, numbness, relief, sadness, shock, victimization, or yearning. 
  • Thoughts: Confusion, difficulty concentrating, disbelief, hallucinations, or preoccupation with what was lost.
  • Physical sensations: Dizziness, fast heartbeat, fatigue, headaches, hyperventilating, nausea or upset stomach, shortness of breath, tightness or heaviness in the throat or chest, or weight loss or gain.
  • Behaviors: Crying spells, excessive activity, irritability or aggression, loss of energy, loss of interest in enjoyable activities, restlessness, or trouble sleeping.

It is important to know that patients and caregivers move through grief more quickly and feel more hopeful when they receive outside support. While support from family and friends can be helpful, many patients and caregivers say that formal support has been the most helpful. Formal support can come from therapists, counselors, and support groups. Individual counseling with a private counselor or therapist can be helpful in coping with grief. In addition, patients and caregivers often find support groups to provide a sense of community. 

Patients Speak About Support Groups1-3

“The positive is that I’ve met people similar, some of them are very nice.”

“There was company, people with the same disease. I found I was looking forward to going. And I thought it was doing me good.”

“We have a cup of tea, cake and we talk about how things are. They get people from different ways of life to talk about the problem.”

“Just having a chat about families and how they are coping, you know that’s the biggest part of it. Getting together and talking to people with the same problem.”

The most important thing is to reach out to others for help and support. People who try to pretend that everything is fine or who turn to unhealthy ways of coping (alcohol, drugs, excessive eating, etc.) usually find that they end up suffering much more than those who ask for help.

Many patients describe that, after moving through the grieving process, they are able to find acceptance and hope. Patients and caregivers talk about becoming determined to “enjoy life”, “live life to the fullest”, and “make the best of the time left”.1-3

What Does this Mean for Me?

Receiving a diagnosis of IPF is overwhelming, and patients and caregivers need reliable information and a great deal of support. 

Key ways of moving forward are:

  • Ask, ask, ask. If doctors or nurses are not providing the information you want, say so politely and continue to ask. The internet can be a good source if you look for reliable websites, such as this site and other patient advocacy organizations. Support groups can also be a good source of information. It is a good idea to check with your doctor about information you get from the internet or from support groups.
  • Support is crucial. Seek out emotional support from family, friends, clergy, therapists, counselors, families living with IPF, and support groups. No one is “fine” after a diagnosis of IPF. No one has to go it alone.
  • Accept emotions as they come. Grief is normal and can result in many different emotions that come and go. Turn to sources of support when emotions become overwhelming. Try not to numb with alcohol, drugs, excessive eating, or other unhealthy habits.
  • Take care of yourself with nutritious food, enough sleep, and exercise as you can tolerate. This is very important for caregivers too. 

References and Further Reading

  1. Ramadurai D, Corder S, Churney T, et al. Understanding the informational needs of patients with IPF and their caregivers: 'You get diagnosed, and you ask this question right away, what does this mean?'BMJ Open Qual. 2018 Jan 30;7(1):e000207.
  2. Senanayake S, Harrison K, Lewis M, et al. Patients' experiences of coping with idiopathic pulmonary fibrosis and their recommendations for its clinical management.PLoS One. 2018;13(5):e0197660.
  3. Burnett K, Glaspole I, Holland AE. Understanding the patient's experience of care in idiopathic pulmonary fibrosis.Respirology. 2019;24(3):270-277.
  4. Fisher JH, O'Connor D, Flexman AM, et al. Accuracy and reliability of internet resources for information on idiopathic pulmonary fibrosis.Am J Respir Crit Care Med. 2016;194(2):218-25.
  5. Goobie GC, Guler SA, Johannson KA, et al. YouTube videos as a source of misinformation on idiopathic pulmonary fibrosis.Ann Am Thorac Soc. 2019;16(5):572-579.
  6. FamilyDoctor.org. Grieving: Facing illness, death, and other losses.