How Online Communities Can Support Patients With IPF

When people refer to a “support network” that surrounds someone with a life-threatening illness, you usually think of close friends or family members. In the past, you would rarely think of complete strangers — however, this has certainly changed in recent years. The benefit of belonging to an online support community, composed mostly of people you haven’t met in person, can be extremely comforting and therapeutic.

When you are diagnosed with a chronic or life-threatening illness, it’s often recommended (sometimes required!) that you participate in a support group to fill the gap of loneliness, isolation or for emotional support. This is especially true when you are a young adult living with a rare disease that most other young adults haven’t even heard of. However, sometimes even those support groups are structured in ways that patients don’t find helpful. For those who haven’t considered joining an online support group, whether it’s a group that’s formally moderated (like our recently launched Pulmonary Fibrosis News forums) or a group through social media, the benefits of doing so are plentiful.

MORE: How the ‘Pulmonary Fibrosis News’ forums differ from other online communities

Here are some of those benefits to consider if you are wary of how an online community of support might help you:

People really “get it”
Unlike talking to friends, colleagues or family members about how difficult it is to live with a life-threatening illness, many of the people frequenting online support groups or chat rooms are patients themselves and really understand. Whether it’s venting, questions about medications or talking side effects, most of the people in online support platforms understand, which significantly reduces the feelings of isolation and loneliness. Another perk: depending on time zones, someone is usually awake and able to chat so it also reduces those feelings when insomnia might be getting the best of you.

Being able to speak your mind
Living with a life-threatening illness is hard and sometimes the feelings are overwhelming. It’s not uncommon for patients to not want to share some of those feelings, fears or anxieties with the ones they love most, such as caregivers or their partners. Online, there are groups only for patients where caregivers are not permitted to join. By not having anyone but patients in a group, it eliminates the fear of your partner or caregiver seeing what you share, which creates a safe space for patients to speak their mind.

MORE: What else to know about our brand new forums

Unique information sharing
In-person support groups are usually geographically organized, and especially geared towards people living in the same country. When online support groups are created, sometimes it can include people from different countries, which may have significant differences in healthcare. This can be frustrating at times, since access to drugs can differ, but it can also be comforting if one country is more developed around the type of disease support you need. Information sharing even between countries can be helpful as an option for patients to consider when doing their own research or generating a list of questions about their care.

Anonymity, if you want it
If someone is uncomfortable with their diagnosis or needs to ask a question or state a concern anonymously, this can be done online. While patients must be careful, there are several reasons why this can be beneficial.

It’s therapeutic
Sometimes becoming part of an online community can be very therapeutic for patients, especially if the topics are unlimited and they can share what’s on their mind. The comments generated on these blogs or discussion topics create a sense of community through shared experiences or information sharing.

MORE: How to find positives when living with PF

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!
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6 comments

  1. Doug Thennis says:

    Very true on line support groups are very helpful you can get a lot of info and be careful of misleading info. Some support groups are Inspire, patients like me and rare connect. There is also webinars which are great like Noah Greenspan you can participate ask question with a real doctor.

    • Charlene Marshall says:

      Hi Doug,

      Thanks so much for reading my columns and contributing your comments too. I agree, online support groups can be very helpful and nice to connect with others sharing a similar experience. I am also glad you highlighted Noah Greenspan’s webinars for people to participate in. Thanks so much for sharing 🙂

      Charlene

  2. Leanne says:

    Hello. My mother in law has ipf and is suffering from pretty bad side effects from Ofev, but the drug is doing what it is supposed to do. Her tests come back pretty good every time she goes. She is older and doesn’t understand online chat rooms and I was wondering if there was a good one I can get her set up on so she can talk to others who may have tricks on dealing with the side effects.

    Thank you In advance for any help you can give me.

    • Charlene Marshall says:

      Hi Leanne,

      Thanks for writing and reaching out via the comments. It is so nice of you to look for options for your mother-in-law, and I’m so sorry to hear she is struggling with Ofev. It can be a very tough drug, I agree! Has she checked out the PF forums yet? This might be something you could help set her up on and she could read the threads (instead of learning how to comment) as there is lots of information on there about Ofev and the side effects. It can be found here: https://pulmonaryfibrosisnews.com/forums/forums/topic/starting-ofev/#post-21308 might this help? Also the Pulmonary Fibrosis Foundation (or the Canadian site) has PF support groups listed, where she could maybe attend in person to speak with others living with this disease? One thing I’ve found that really helps manage my GI side effects from Ofev is Immodium, but not the regular oral tablets. I take the sublingual tablet (dissolves under the tongue) and it is so much more effective for me in managing the unpleasant GI stuff. Maybe your mother-in-law could try this?

      Hang in there and thanks for writing.
      Charlene.

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