Help Needed Again!
Still drowning in deadlines here, so I am calling on you my wonderful readers for some more help. I am giving a presentation about online patient communities at Mayo Clinic’s Healthcare Social Media Summit, in Brisbane, Australia. I feel there has been so much written and said about this topic before, so I am looking for some fresh stories and perspectives to share. Can you help me?
If I use your quote or story, I’ll make sure to give credit and a link to your online profile. Can you answer the following questions? And/or can you share a link to a blog you have written on the topic?
- What’s your favorite form of online participation? Discussion forums, blogs, Facebook groups, tweet chats?
- When did you first join an online community? And what was the reason for doing so?
- What do you gain from interacting in an online community?
- Do you have any stories you’d like to share about how an online community has helped you?
Many thanks as always for your continued support. I am so grateful to you.
Sounds interesting and I bet Australia has the same doctors at a distance problem as we have here in Canada. Without the the ability to perceive people at a distance as being whole persons I know my distant self represents as incomplete. (Our system here doesn’t allow email contact for “privacy reasons” anyway).
Also, based on the principal that medicine is a hands-on profession, I think the system itself is designed to exclude the non-physicality of the distance patient as too much of a cognitive load on the imaginations of physicians. It’s an added layer of complexity that is marginally accommodated by reducing the distance patient to a tic-box simplicity of Frequently Mentioned Complaints. Which are not responded to anyway.
As for what I get from an online community? Confirmation that I’m still a person among other real people where feelings are allowed to be expressed. Living in a rural location I’ve been online for years to remain in contact. Unlike my experience with the medical system, online communities are responsive and life-affirming.
Have more thoughts on this and might actually answer your questions directly. Should we post our responses here?
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Scott, I truly appreciate you sharing your perspective, and yes, please do post responses here, as I would like for others to join the discussion. Many thanks.
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Ms. Marie, I do not know if this will help you or if it is quite what you are looking for, but I can give you a link to a couple of posts I wrote about my online gastroparesis support groups. I am an administrator in several, and I have found that they get me through my darkest days in this struggle with chronic illness. Here are the links: http://melissarvh.blogspot.com/2015/04/hawmc-challenge-day-6-your-hero.html and http://melissarvh.blogspot.com/2015/02/thankful-for-my-support-groups.html. If I can help or contribute in any other way, I would be most willing. I hope your presentation goes well — but I know it will! Please take care!
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Thanks so much for sharing these links Melissa – I look forward to reading them.
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I prefer FB groups, I have tried forums but don’t trust them in the same way.
I joined one in particular when I was diagnosed with inflammatory breast cancer, a rare form of breast cancer. I wanted to find out more and from a different perspective to my medical team and the cancer charities such as Macmillan. After a while all of the online information sounded the same and I wanted a personal perspective.
I have gained an enormous amount from this group. I got the practical, personal support I was looking for such as how to approach chemo, what surgery and rads would be like. I have also learnt an enormous amount about how this disease may affect me in the future. I am enormously grateful and humbled at the support and experiences shared by ladies who are stage 4 and indeed have lost their lives. What I did not expect was to make such good friends with some people. I can rant and rave to them as well as support them when they need me. This two way support has made me feel valued, useful and strong at a time when I feel fairly weak and useless by myself.
Apart from the friendships I have made there is one particular thing I have got from this group which may contribute towards saving my life. My surgeon did not want to perform a full axillary node clearance when I was having my mastectomy. He wanted to perform a sentinel node dissection instead on the basis that I had had a very good response to chemo and that he was almost certain I had no cancer left in my lymph nodes. I knew that this was against the standards of care for IBC. Through FB I was given the support to argue my case. I was directed to the relevant documents but most importantly I was given the reassurance that I was right. The meeting I had with my surgeon was incredibly difficult. He put a lot of pressure on me but knowing there was a bunch of people in my corner gave me the courage to stand my ground.
He performed a full axillary clearance. One of the nodes removed still had live cancer cells.
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Hi Claire, this is enormously helpful.. Many thanks indeed for your comments
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Marie, that’s wonderful. I can tell you about some of my experiences.
I personally like most of the communities you listed: forums, (private) facebook groups and blogs. I first joined an online community when I was diagnosed with breast cancer. I always had my personal “my space” and facebook accounts but they were used mostly to stay in contact with family members who live outside of the U.S. (most of them do).
I received the most incredible support from online forums — specifically the ACS breast cancer forum. I posted there so many times, and each time I received amazing support and understanding. I am still friends with these women and I have met quite a few of them in person already (every year we meet at Hershey!). In some strange way they feel like family to me. I never felt judged by any of them. Mostly, we all respect each others’ opinions and our own way of handling cancer. We are simply there to listen and to be acknowledged. And age doesn’t matter that much although I do wish I knew more young cancer survivors with similar circumstances to mine.
I feel each online community is different though, depending on what stage you are with your cancer mess. For example the ASC is great for people who are undergoing treatments — you hear about different stories and sometimes these stories may not be so encouraging for someone who finished treatments (you get patients dealing with different stages of cancer). This is one of the many reasons why I started blogging. I felt like each stage of my cancer mess required a different type of support group/enviornement (not sure if I am making sense, but I can clarify).
Validation is important to me and I this is one of the benefits I get from online communities.
Thank you for all you do. Good luck!
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Rebecca, I am truly grateful for this extensive reply. It’s been really helpful. Many thanks!
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Glad it helped. I am available if you need more feedback.
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Great comments Everybody
I think the first link will be the best for you. I’ve been in online groups since Yahoo was really big, and before Google was established as a search engine. Here are 5 blog posts in the areas you mention
http://yourgoldwatch.blogspot.ca/2015/03/support-group-from-patient-point-of-view.html Comments from members on the value of an online group
http://yourgoldwatch.blogspot.ca/2013/03/the-expert-patient.html The experts you can find online
http://yourgoldwatch.blogspot.ca/2014/11/sjogrens-support-group-highlights.html In person description of meeting
http://yourgoldwatch.blogspot.ca/2014/11/differences-between-family-and-support.html
What was missing at the conference, and family vs support group
http://yourgoldwatch.blogspot.ca/2013/04/peer-mentor-program_20.html
A little off topic but this is about peer to peer mentoring and actual training to do peer support
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Great comments everyone
I think the fist link will be the best. I’ve been in online groups since Yahoo was really big, and before Google was established as a search engine. Here are 5 blog posts in the areas you mention
http://yourgoldwatch.blogspot.ca/2015/03/support-group-from-patient-point-of-view.html Comments from members of my online group on the value of membership
http://yourgoldwatch.blogspot.ca/2013/03/the-expert-patient.html The experts you can find online
http://yourgoldwatch.blogspot.ca/2014/11/sjogrens-support-group-highlights.html In person description of meeting
http://yourgoldwatch.blogspot.ca/2014/11/differences-between-family-and-support.html
What was missing at the conference
http://yourgoldwatch.blogspot.ca/2013/04/peer-mentor-program_20.html
A little off topic but this is about peer to peer mentoring and actual training to do peer support
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Hello Marie – terrific news about your Social Media Summit (and you’ll be heading back to Australia, you lucky girl!)
I’ve written a 3-part series at HEART SISTERS about online support groups:
1. Discover. Join. Leave. The Life Cycle of Online Patient Groups – http://myheartsisters.org/2013/09/04/lifecycle-of-online-groups/
2. Online Patient Groups: Why So Under-Used? – http://myheartsisters.org/2013/09/12/online-patient-groups-why-so-under-used/
3. What Really Goes On in Your Friendly Online Patient Group? http://myheartsisters.org/2013/09/20/behind-the-scenes-online-patient-group/
In answer to your specific questions….
1. What’s your favorite form of online participation? * If you have a diagnosis, Inspire.com has an online community that’s discussing it. Their WomenHeart group has almost 19,000 members. I follow a number of patient blogs and physician blogs about my specific interest (heart disease), two Facebook groups, and (very rarely) tweet chats – I find tweetchats too exhausting for one hour trying to catch up with disjointed, helter-skelter topics. Prefer a good well-written blog article any day…
2. First joined the WomenHeart online community the day I was discharged from hospital following my “widowmaker heart attack”. Why? I’d been misdiagnosed with acid reflux two weeks earlier at the same hospital, and was angry and confused and eager to learn more about how that could have happened!
3. Best things about online communities: you don’t have to leave the house on a rainy night and drive across town, and you can pick and choose the specific topic concerns you need (instead of sitting there for a two hour in-person group when you’re feeling sick) plus discussions are open 24/7.
4. How an online community helped me: it was on the WomenHeart site that I first learned about the annual “WomenHeart Science and Leadership Symposium for Women With Heart Disease” at Mayo Clinic in Rochester, Minnesota. I thought at the time: “Hey! I’m a woman with heart disease – I’m going to apply to attend this!!!!” My application was approved (all expenses paid – first Canadian ever invited to attend) and that five days in 2008 became an utterly life-altering experience. There are now many of us ‘Mayo grads’ participating in various ways on that same community.
Finally, it’s also important to remember (as I outlined in my “Discover. Join. Leave.” post) that online communication (and its anonymous nature) can foster what social scientists call “disinhibition” – problematic in many online communities when it leads to ‘flaming’ (deliberately provocative or insulting posts) or ‘spamming’ (unsolicited commercial messages). So my hope is that you’d have time to remind your audiences not to sugarcoat all online resources.
Best of luck to you in Oz…. 🙂
hugs
C
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Ooh Annette and Carolyn – you’ve certainly come up trumps for me (hope that’s an expression that translates to Canada!) Big thanks to you both.
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What a great opportunity Maries! I will link to a blog post about “virtual” mourning written the week Rachel and Susan died. But to address your topic directly, there are, for me, two critical opportunities that online support provides. First, I find that it is much easier to find others “like me” online – in my case lobular stage iv patients diagnosed comparatively young, still parenting, etc. And similarly, I believe it is easier to connect with others who have informative experiences – who have undergone a procedure I’m contemplating or a drug I’m moving to. The anecdotal insights of those who have been there can be invaluable.
Good luck!
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Lori, it’s so lovely to see you here again. Thanks for your comments here and spookily..I had just added a slide to the presentation with a picture of Rachel before I read your comment. I wanted to bring her virtually back home to Australia. Please do send me that blog post when you can.
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Hi Marie, what a great, important talk you will be involved in! I’ve given some answers; if you need anything else, let me know.
What’s your favorite form of online participation? Discussion forums, blogs, Facebook groups, tweet chats?
I love communicating via blogs (my own and leaving comments on others’), as well as through Facebook and tweet chats.
When did you first join an online community? And what was the reason for doing so?
Interestingly, I started a blog years after cancer because I wanted to write a book and develop it in small chunks. I didn’t think or expect many people to read it. As the blog continued, I found people in the breast cancer community responding to me, and I became interested in others’ blogs and stories. It was then that I realized I had a lot to say and learn about the subject of breast cancer and its emotional, physical, and spiritual effects.
I am so glad I “lucked” into this online community.
What do you gain from interacting in an online community?
When one is diagnosed with breast cancer, whether currently or years ago, one often feels alone. Online communities help me feel less alone. Seeing that others have the same struggles helps me realize that these struggles are typical of those who’ve struggled with an illness. I enjoy having a voice and having people listen to what I have to say (dealing with a disease and its aftermath can render one feeling powerless), but just as important is listening to what others have to say.
Do you have any stories you’d like to share about how an online community has helped you?
Many times, I have felt down and saddened about my breast cancer experience and my struggles with PTSD. I’ve been in touch with other bloggers with PTSD, and I feel so much less alone. Last night on #BCSM, we chatted about how to create time for ourselves to give ourselves a break from our busy lives. I made a commitment then and there to resume my hobby of art. I know this will help me emotionally, and it’s all because of the encouragement of my online peers.
I hope this helps. Thank you for reaching out to us!
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I find that the twitter chats are interesting but I’m challenged by the synchronous nature of them – mostly that they only really occur during a specific timeslot – the hashtags are not that much of a community outside of the specific time the tweetchat runs. For that reason I prefer the facebook groups – mostly because I can engage with them whenever I need to and they typically have enough of a critical mass that there area always others around when I need to talk to someone.
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That’s an interesting point re Twitter chats. It also hinders global participation. Many of the chats I’d like to take part in like #BCSM take place at times that translated to the middle of the night in Ireland, so I have to miss them.
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Hi Beth, lovely to hear your thoughts on this. Many thanks x
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Thank you so much Beth for taking the time to reply. I agree with so much of what you have written here, especially about blogging. I am only sorry I can’t take part in #BCSM because of time differences. I feel blessed to have you in my virtual for so many years now. M. x
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I forgot to mention the BAYS group (Bay Area Young Survivors). They use an old fashioned Yahoo group for communication – so I wonder if it really qualifies as “social media”. Everyone is vetted before they are added to the group and there are strict guidelines that you cannot post things from inside the group to anywhere outside without specific permission. With the group they have created a safe space for people to talk about some of the more personal impacts of living with breast cancer, especially as a young person.
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I hope it’s not too late to answer. Here’s my two-cents’ worth.
What’s your favorite form of online participation? Discussion forums, blogs, Facebook groups, tweet chats?
Blogs are it for me. I never used a forum, I don’t log onto Facebook very often, and I can’t keep up with twitter.
When did you first join an online community? And what was the reason for doing so?
I started my blog just after my diagnosis, in an effort to keep my friends & family up to date (and to avoid having multiple retellings to the same news, to different groups). As my cancer “journey” became complicated, blogging was more therapeutic than informative.
I am so glad I “lucked” into this online community.
What do you gain from interacting in an online community?
Community, support, understanding, and a license to vent ad nauseum! A fantastic by-product has been getting to “know” my blog friends and feeling an instant connection because we truly understand what each other has been through, in a way that others can’t really grasp.
The online community has helped me in the predictable ways (receiving encouragement from those who have been there; disseminating information on treatment or drugs, etc) but also in realizing that at some point, life returns to some semblance of normal and cancer no longer consumes and defines us. On the flip side, I have had a couple of women contact me via my blog after they too suffered a post-mastectomy infection. While googling what to do/how to live with an ongoing infection, they found my blog and left comments asking if they could speak to me. While I’m certainly not a medical expert, I am happy to share my experience and the things I learned in hindsight that may help shorten their trials, alleviate their stress, and improve their overall outcome. Being in the position to help other cancer patients has benefited me in ways I would never imagined while in the weeds with my own complications.
Marie, I know you will be a rock star at the conference in Brisbane, and we in the BC community are so lucky to have you as one of our shining ambassadors. xo
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Hi dear Nancy – thank you so much for taking the time to leave your comments and for your kind words. You’ve always been such a wonderful supporter in my virtual world and I appreciate your kindness very much x
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This resonates so much – the online community was critical for me being remote physically from the familiar. I will look out some posts, as I wrote about it quite a bit….. P xox
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Hi Philippa, I certainly do remember you’ve written some really insightful posts on this in the past. I’ll look them up again. Many thanks, Marie x
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Hi Marie – I hope i’m not too late too – I also have been having big deadlines!
What’s your favorite form of online participation?
For support I like being part of some Twitter chats, online communities, and finding areas where Ilve groups meet. I especially enjoy the blogs, interacting and getting to know each other, but my favorite part is when I get to meet people I’ve met online, in person. It’s so nice to see people at conferences, liuches and special meetings.
I also like to join organiztions that advance advocacy and impact change. This led to me starting my own non-profit online.
When did you first join an online community? And what was the reason for doing so? I joined Pink-Link in 2009, because my friend Vicki Tashman created Pink-Link- a non-profit site (one of the first) with interactive online tools to meet other breast cancer patients. I was not active in social media until I joined Twitter, Facebook and made a blog online in late 2012 after meeting great people at the NBCC.
What do you gain from interacting in an online community? a tremendous amount. It’s amazing how well we get to share information and connect as we search for issues that are important to us.
Do you have any stories you’d like to share about how an online community has helped you?
I wrote a piece about how excited I was with everything happening in Social media :especially Scorchy’s accomplishment with Facebook. https://a4bc.wordpress.com/2013/06/15/scorchy-bcsm-scotus-asco13-bcans/
I wrote about a very hard time when I was depressed and the onlne community gave me a huge amount of support. I was overwhelmed by how kind everyone was. It was nice to see I was not alone. https://a4bc.wordpress.com/2014/02/12/i-am-in-free-fall-but-determined-to-climb-out-of-depression/
If I am late- no worries. Hugs! – Susan
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Hi Susan, not too late – I give my talk tomorrow so I still have time to make changes. I remember you writing about these topics at the time. I am looking forward to reading them again. Thanks so much for weighing in on this and I can’t wait to catch up with you again soon x
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Nothing to add here Marie – just want to wish you good luck in Brisbane -you’ll be great – you always are!
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Marie, can’t wait to see you again down under. Safe travels today x
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1. My favorite is online forums. The forums offer completely interactive ways to communicate with others who share similar challenges. Their unique perspective on rare but dreaded diseases makes one feel less isolated and more able to help others struggling, those who have nowhere else to turn.
2. I joined in 2013 because I needed answers to potentially socially isolating questions I had about clinical trial participation and dealing with the challenges of long-term travel, side-effects, and living alone.
3. I have gained much information–medical, emotional, and psychosocial–about coping with a serious illness. I believe I learn more from my readers’ comments than the readers learn from me.
4. A story about this is how I process an illness that is long-term and feels more life-threatening as time progresses. How others deal with multiple brain radiation like stereotactic radiosurgery and the fear of slowly dying and facing possible hospice is no less than astounding. They share links to all kinds of radiation options available. Some compassionate patients who’ve weathered the storm also like to give us their stories of living 5 years or longer with this disease and how they choose to look forward, not backward.
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Once again, thank you all so much for your wonderful help with this. My presentation went well. I will be posting the slides here later this week.
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