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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
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2 Replies
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Charlene,
“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”
Makes sense.
What about grandkids who are in college and out of town or grandkids who are still children or teens? They can’t help us, what do you think of “protecting” them?
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Hi Gil,
Thanks for reading this post!
I am a bit bias when it comes to sharing information with children and teens, and this is simply because I’ve worked in both hospital and community-based environments where families and children experience some really awful things. I have seen siblings lose their brother/sister suddenly, or be caught in the middle of domestic violence, or have to deal with cancer and organ failure due to a number of difference diseases. And while supporting children and teens through all of this, do you know what I find the most remarkable? Their resilience! I always say to families that children are capable of coping with almost anything, as long as we give them the age-appropriate tools to do so. In my experience, more often than not, kids and teens were disappointed in not knowing about something their family was going through, because they knew something was going on / impacting their family and felt left out when they didn’t know. Now, I guess that doesn’t mean telling them everything but usually sharing something about a disease or experience impacting the family by using age-appropriate language is enough to satisfy their curiosity. If they want to know more, they will ask, and when their curiosity is satisfied, they’ll stop asking questions so I always say to families too: take the work out of guessing how much is “too much / too little” to share with them by leaving it up to them to ask questions. Does this help at all? In my experience, I’ve found more often than not when something terrible happens in a child’s family (ie. a sibling dies), the healthy sibling knew something was wrong anyways (since they often overhear conversations or oversee a text/email) and their trust is then broken with the parents for not telling them. This isn’t the situation in all cases of course, but generally speaking, I am an advocate for children to know the information they need to. This usually goes against a parent/adult’s inclination to protect them, which I also understand! It is about balance I think, balancing the situation as well as the child (and family’s) ability to cope.
…. sorry that was a really long reply! Wonder if it helps at all?
Charlene
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