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

Charlene Marshallby Charlene Marshall

In Social Clips.

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 are 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: Six ways to help you take care of your lungs

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: Six ways to manage your health when you have pulmonary fibrosis

Lung Disease 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.

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17 comments

    • Charlene Marshall says:

      Hi Enid,

      Thank you for reading my column and contributing your comments. I am glad that you are finding research and Google helpful in seeking information about your disease. Yes you are right, and I also believe it is important for patients to educate themselves too and ask lots of questions to advocate for our needs. Best wishes to you.

      Charlene.

    • Jackie says:

      I agree!! I have a Masters in Education and leadership, so I know how to evaluate information. Yes some people so not have this type of training and will freak out at what they read. It is a case by case, person to person issue.

      • Charlene Marshall says:

        Hi Jackie,

        Couldn’t agree more – it is so important to evaluate and verify credible sources of information to improve our understanding about something, especially medical/disease-related. Thanks for sharing your thoughts, and everything is very much on a case by case basis. Take care! Charlene.

    • Charlene Marshall says:

      Hi Pat,

      Yes, I couldn’t agree more with you. Did you read the article that was just released on stem cell therapy research out of China? If you haven’t and you’re interested, let me know and I will try to find the link again for you. I think stem cell therapy has such strong potential to be transformative in many areas of medicine. Here is hoping! Best wishes to you and thank you for reading my column.

      Charlene

  3. worried spouse says:

    18 months ago, husband was diagnosed with copd and squamous cell carcinoma – tumor is in bronchus / inoperable due to attachment to bone — chemo and radiation shrank it slightly, less active. upper Left lung has collapsed. now 3 nodules on “good” right lung biopsied and show same cancer. “stage 4” because it is the same and is present elsewhere — recommended treatment is Keytruda. HOW might COPD react to Keytruda? We have trusted pulmonologist and oncologist to this point, seem to have great communications for treatment and testing and necessary medications. Is there something else we should be doing, knowing, asking, …..
    hubby was a heavy smoker now age 62.5 so much to learn, so quickly before next treatments, tests, Thanks for any guidance

    • Charlene Marshall says:

      Hi Theres,

      Thanks for reading my column and reaching out. Sending you positive vibes and wishes for your husband, thank you for sharing a bit of his story with us. Unfortunately, I cannot advise or provide any guidance as I don’t have any experience with cancers of the lung/tracheal area or COPD, and I’m not sure what Keytruda is. I’d suggest going directly to your trusted physicians with these questions, or check out *credible* resources online regarding your questions. So sorry I can’t be of more help! Wishing you and your husband nothing by the best.

      Regards,
      Charlene.

  4. David Powell says:

    Really glad i found this forum, but note i found it using google.
    I have PF and was turned down by Emory for Transplant. I am currently being evaluated at two other centers of excellence University of Kentucky Hospital and Houston Methodist Hospital

    • Charlene Marshall says:

      Hi David,

      Thanks so much for writing, and letting us know how you found our forum. I am really glad you found us as well!
      So sorry to hear you were turned down by Emory for transplant, that must have been frustrating for you but I am hopeful the other two centres of excellence will have a different outcome for you. Keep us posted on how that evaluation is going, and wishing you nothing but the best!
      Warm regards,
      Charlene.

  5. hazelfeilynn says:

    Hi Charlene,

    Really admire your strength. Recently been diagnosed with lung fibrosis. I don’t know how long this journey will lasts, but I will keep trying my level best. Thanks for sharing all these useful info.

    • Charlene Marshall says:

      Hi Ezelin,

      Thank you for reading my columns and reaching out via the comments. While I wish none of us had to deal with this cruel disease, it is nice to be able to connect with others in the same fight. I really appreciate your kind words as well, thank you. Please do keep living your best, as none of us truly know the amount of time we have left to live. I just had a conversation with my friend about this today, and she is completely healthy. Hang in there!
      Charlene.

  6. Jim Finnen says:

    I read an article by Magdalena Kegel in Aug. of 2017 in which she referred to the fact that the University of North Carolina were in discussions with regulatory authorities to start clinical studies on a stem cell treatment for lung disease.
    I would appreciate any news or update on this subject which is of very important to me personally.
    Thanks you!

    • Charlene Marshall says:

      Hi Jim,

      Thanks for reading our columns and reaching out via the comments. I too have an interest in stem cell treatment for IPF/PF as I believe stem cells are the future of medicine, and have so much potential. That said, due to the scams out there regarding stem cell use and IPF, I remain a bit skeptical about anyone claiming to have this type of treatment. It’s unfortunate because a couple bad experiences could tarnish my thoughts on the topic, when in fact, some centres likely have some very credible stem cell leads. My suggestion would be to reach out to UNC directly to ask about an update on their clinical studies involving stem cell therapies for lung disease. Probably the best way to get the most accurate and up to date information. Goodluck!
      Charlene Marshall

  7. Black says:

    Hi,thanks for the post, i have had chest pain for two months and I’m on antibiotic medication, well there’s some improvement but am worried of tb cos I live in an area with an outbreak, how can I be helped? Thanks

  8. Blackman says:

    Thanks very much for the post, I’ve had chest pain for Atleast two months, the doctors have put me on antibiotics medication. I have some improvement but am worried of tb cos I live in an area with an outbreak, how can I be helped, thanks

    • Charlene Marshall says:

      Hi There,

      I’m so sorry to hear of this experience – chest pain is terrible to experience. I’m glad you’re on antibiotics to address any type of infection, so continuing to take those and get as much rest and fluids as you can is important. I’m not sure about the TB outbreak, but asking your doctor about preventative measures to avoid contracting it is probably the best way to start. Stay safe! Charlene.

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