How Online Communities Can Support Patients With IPF

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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.

Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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8 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

      • Lesley Boyer says:

        Hi Charlene,
        I’m a new patient of IPF and have a couple of side effects. What do you eat? Given Corona Virus, who shops for you? Are you cooking? My olfactory system has gone sideways and taking it is similar to morning sickeness.
        I’d love your input.
        [email protected]

        • Charlene Marshall says:

          Hi Lesley,

          Thank you so much for reading my columns and reaching out via the comments. Sorry to hear of your new diagnosis of IPF — you’ve found a great resource through PF News, and the forums are a wonderful spot to connect with other patients as well:https://pulmonaryfibrosisnews.com/forums/ . Be gentle with yourself during these tough days, I remember how I felt shortly after news of my diagnosis and it was tough.

          Are the side effects a result of Ofev/Esbriet do you think or are they as a result of the disease itself? If Ofev, there is a great conversation on the forums right now about managing those side effects. I (thankfully!) don’t have a lot of trouble with my appetite right now, but thoroughly enjoy smoothies when I don’t want to make a meal and expend the energy. The only thing I struggle with is dairy milk, so right now I have switched to soy. As for doing groceries for me during the pandemic, my Mom will shop and bring things to my house, and/or my brother and sister-in-law will. I am also very lucky to have incredible colleagues who offer to pick things up for me regularly too. I wipe everything down, along with counter spaces and door knobs for anything that comes into the house. I enjoy cooking and am happy to continue doing this during the pandemic. I am also ordering meal kits right now too, fresh ingredients to make a meal right to my doorstep. I am using HelloFresh.

          Would trying a smoothie with banana, water and a flavored protein powder (very bland) be something you could tolerate in the morning? I find this helps me sometimes. Feel free to write anytime!
          Sincerely,
          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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