Wednesday, July 10, 2013

Why do people in the hemophilia community use social media?

I'm an advocate for using social media, but not everyone in the hemophilia community feels the same. In conversing with others, the question arises, "Why do people in the hemophilia community use social media?" Below I offer a few common reasons:

Some are driven by the affinity impulse. Our common base of experience (bleeding disorders) naturally draws us to connect with one another. For those dealing with bleeding disorders, it can be hard to relate to others who have not walked in their shoes, even if it is family. Much like war veterans bond through a shared experience, so do those affected by bleeding disorders (directly or indirectly).

Others are driven by a validation impulse, a desire to be seen as knowledgeable experts and reassurance of their place in the world or community.

Most people are simply seeking support. In such a small community, making and maintaining friendships online is often necessary. Some people live in rural or remote areas and others just prefer to stay in touch with cross-country friends they meet at conferences and summits.

Paying it forward is another popular reason people use social media. Many people receive support and learn about bleeding disorders from articles and information shared through social media. They are fed, in a sense, and they feel compelled to do the same for others (pay it forward).

The altruistic impulse drives some to help with advocacy efforts, support others... because they feel compelled to do so or they believe it's a worthwhile cause. This one is unique because it includes people unaffected by bleeding disorders who help simply because they want to help others. They do not benefit directly, themselves.

Why do you use social media? Share your reasons in the comments below.


Prophyholic said...

I think I will choose affinity impulse. I started out searching for conversation or blogs and did not find ones that were current, so I started my own. Through starting my own, I found others out there who wanted to talk about it as well. I take each day at a time with really no end goal but I realize that it does help with paying it forward, altruistic impulse and seeking support!

RID said...

I would have to say "all of the above". I am running a page to try to advocate for more to be done for inhibitors in hemophilia (which is something that is not much talked about) but I find that I get back so much more than I ever hope to give out. Just feeling like you can connect with others is so empowering and at the end of the day I usually walk away feeling good that I was able to share information but also taking away so much knowledge and understanding that I might not have had if I had tried to do this some other way. There is still something to be said for face to face conversations, so I always try to meet the people I interact with on social media in real life whenever possible. It really is amazing that one of us, sitting at home behind our computers are able to connect with each other in so many ways. Thanks Infuzr (aka Mark Kenny) for pointing this out. Hope to meet you in person one of these days. -- Debbie Porter

Mark Kenny said...

Thanks for reading and commenting, Prophyholic. Infuzr was founded because of the problem you mentioned. For some people, it is hard to maintain an individual blog. Infuzr was created to pool those contributors together and provide a platform where they didn't have to feel the pressure to share content regularly. By having multiple contributors, the goal is that everyone can contribute and we'd have enough content to publish regular posts (keeping a shared blog current). I admire your dedication to your blog. It is a lot of work. I think, as you mentioned, what may have started as a project driven by the affinity impulse, has become something maintained by that, as well as altruistic impulses and paying it forward... and probably all of the above. Others seek you out for support. Keep up the great work. Thanks again for reading and sharing your thoughts.

Mark Kenny said...

Appreciate you reading and sharing, Debbie. I just returned from the NHF Inhibitor Summit in Seattle. Were you there? or are you going to Nashville? I think it's great that you saw the need and took the initiative to meet it through RID. Both my sons have severe hemophilia A. Both have had inhibitors. Our oldest son's inhibitor was tolerized a few years ago after switching to Alphanate. Our youngest (9) has tried ITI five times, including this last one after receiving immunosuppression therapy (Rituximab). None have been successful and his inhibitor remains a problem for us. Social media is invaluable to those in small and rare medical disorder communities, such as the hemophilia and inhibitor communities. You are right about needing to strengthen those connections by taking them offline. The conferences and summits are great for that. As a matter of fact, I created an event called Social Infusion, where people can meet up during the NHF Annual Meeting, just to socialize (no presentations or speakers). You should check it out in Anaheim this year. Anyway, I love what you are doing. Thanks for reading and commenting. Keep up the great work on RID. Look forward to meeting you soon, Debbie.

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