6 Dos and Don’ts for Living Well With a Chronic Illness

In response to how to cope with a chronic illness, many reply with the following statement: “there is no rulebook, so we write it as we go.”

The sentiment of this is to say that there really are no right or wrong ways to deal with the diagnosis of a life-threatening or chronic illness, nor are there instructions on how to cope while living with it. Each person’s journey with a chronic illness is as unique as they are, and strategies that work for some will not work for others. That being said, there is strength in numbers and usually with a little networking, patients can find ways of coping from fellow patients who are willing to share what’s been helpful to them. The hope is that they can apply the experiences of others to their own lives to better cope with their disease.

MORE: Seven of the best apps for managing a chronic illness

After being diagnosed with pulmonary fibrosis, patients can feel very alone and confused about how to deal with having a life-threatening disease. However, the collective support from friends, family and colleagues will really help. Most notably, there’s now an online community that rallies together to help new patients navigate all the thoughts and fears of being diagnosed with a chronic illness. There are some classic “dos” and “don’ts” after being diagnosed with a life-threatening illness and although none of them are written down in a rulebook, they are considerations for helping others cope with the diagnosis of a chronic illness.

Based on experience from other patients, here are a few tips:

DO: 

  • Allow yourself time to process all the emotions. Sometimes after being diagnosed with a life-threatening illness, patients may feel happy that they have finally found an answer to their symptoms and why they feel unwell. It doesn’t mean they are happy with the diagnosis, but having an answer and a subsequent treatment plan brings a sense of a relief. Process all the other emotions one might expect you to experience too, including but not limited to, anger, guilt, sadness, fear and frustration. There is no right or wrong way to feel and giving yourself time to process all the emotions is important.
  • Seek out support from friends, family and colleagues. As much as it might feel easier to do this alone, living with a life-threatening illness can become overwhelming quickly. Feeling guilty and like a burden is common, but be aware of these feelings and seek out friends and family members who can support you. This will alleviate some of the guilt of frequently asking the same small group of people to support you.
  • Embrace your diagnosis as an opportunity to educate: knowledge is power! Sharing your story may be hard at first, and it will take courage, but often times the rewards outweigh the risks of sharing details of your illness. You never know who may have had experience with the disease you have, either having it themselves or sharing in it with a loved one. Often people who care about you will want to jump on board with how they can help raise awareness for a cause that is now dear to them, because you are important to those around you. Raising awareness and educating others is a powerful way to harness some control back into your life, and you never know who you may touch or inspire along the way.
  • Stay off Google! As tempting as it is to pull up millions of online pages of information about your illness within seconds, it is often unhelpful unless you are seeking a credible source. Sometimes the information online is terrifying and the important thing to remember is that when it comes to your health, your physician or team of specialists are the most knowledgeable and should be your first stop for information.

DON’T:

  • Try to protect others by not sharing your struggles. This is an incredibly hard lesson to learn, but one that is important. Your struggles are a product of your disease. Protecting others puts them in a position of failure when it comes to helping you: they cannot help you if they don’t know the reality of your situation.
  • Don’t put off asking questions. Your questions are important, they are valid and they are why doctors are there: to answer your questions and treat your disease. If you have a question, it’s important to speak up in a timely manner so that you can manage your disease as effectively as possible. 

These are likely only the “tip of the iceberg” when it comes to the dos and don’ts of living with a life-threatening illness. This list could go on and on. An important piece to remember is that whatever it is that you are doing to cope with your disease is unique to you, and if it is helping then keep it up: there are no right or wrong ways to live with a chronic illness.

MORE: Five ways idiopathic pulmonary fibrosis impacts daily life

Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

2 comments

    • Charlene Marshall says:

      Hi Katrina,

      Thanks so much for reading my columns and for getting in touch with us. I’m happy to share more if you let me know what you’re interested in specifically 🙂 To start, the PF News forums are a great place for obtaining more information about various aspects of pulmonary fibrosis. You can join for free here, if you’d like: https://pulmonaryfibrosisnews.com/forums/

      Take care,
      Charlene.

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