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#HAchat Recap: To share or not to share? That is the question!

Privacy and Identity concerns have always been a big part of what it means to be plugged into the online scene.  Online, you’re in control of what you share about yourself, you can mold the way others perceive you in a way that you can’t necessarily in real life.  In relation to health, this can be liberating.  Stigmatized diseases can be openly researched and discussed without fear of others finding out.   For Health Activists, you have the power to reach more people with your story, to share experiences that you may not have in your day-to-day life.  The internet has served as an important empowerment tool for patients, but with great power, comes great responsibility. Privacy is an issue that is not taken seriously enough today, especially by young people online, and the decision to discuss your health online creates an added layer of complexity. If employers don’t want to see pictures of you with solo cups and taking shots of Captain Morgan in college, then they certainly aren’t going to want to read a status update that says you are too sick to work two out of five days a week.  So what do you share? What don’t you share? What do your friends and family feel comfortable with? These are all question that you should be asking yourself as you begin your journey as a Health Activist.  Check out what others had to say in this week’s #HAChat.


Anonymity and Health Activism

Privacy concerns vary widely in the online community, by both personal preference and condition.  Some, like TiffanyAndLupus, have always been open about their condition.  Tiffany even announced her Lupus diagnosis via Facebook! Others, however, were more hesitant to share their condition with others, or didn’t feel comfortable sharing their names or other personal information.  Others went through a learning curve around how much to share, or began to open up over time.

kimmieCollas: I started out with a fake name, to keep ppl from knowing *i* was the one writing that’s where the “kimmieCollas” came from #HAchat

caissg privacy concerns are bigger issues when condition has secrecy and stigma. How can you get help without the truth? #HAchat

anng27: Anonymity allows people to talk openly without worrying about employers, insurers, gov’t looking over their shoulder #hachat

FeliciaFibro: how SM could be later used against you by an employer, insurance, lawyer, benefit person w consequences #HAchat

anng27: I was too young to think much abt privacy, but it was in the days when everyone had a handle and no one shared their address #hachat


Parents and caregivers seem to be particularly cognizant of what they share about their loved ones, especially for parents that are blogging of sharing information about their children.  Not only do they not want their child’s entire medical history to be searchable later in life for some of the reasons mentioned above, but many parents don’t feel they have to right to share their child’s entire story.

FoodAllergyBuzz #HAchat when I first got online, I was concerned for my children’s privacy most of all

caissg #hachat: as spousal caregivers, we need support but we don’t want to reveal the identity of the patient either. It’s a fine line.

Even when you’re blogging about your own experiences, you still need to be aware of how much you share about friends or family:  kimmieCollas: my main “worry” is the privacy my family and friends, even though i never NAME them, it’s not that hard to figure out #HAchat.


Being Yourself Online

Though anonymity can be a great way to enter the online community, whether to protect your own identify or that of someone you love, there is a downside.   Openness builds trust.  Hiding your identity may make others reluctant to share with you.  It may prevent you from seeking the help you really need if you need to venture in the real world from the online community.

TiffanyAndLupus: I use my name because I am a person not an avatar. I have a story I want to share with real emotions. Hard to do so anonymously #HAchat.  Anonymity cons for me are: distrust. Some feel they cannot trust you if they are sharing themselves and you aren’t. #HAchat

caissg #hachat: con with anonymity is no physical help. In case of health issues, one has to physically see a local professional.

serenebutterfly The cons is that you don’t really connect with others in the same way if they didn’t know your name and other info #HAchat


Something we’ve noticed, however, is that Health Activists (even those who begin participating anonymously) become more and more comfortable sharing aspects of their lives as time goes on.  This may be due to privacy stipulations on certain social platforms, but it seems to also be for the sake of creating real connections with others and sharing their WHOLE experience rather than just a snapshot of it.

serenebutterfly Think as I have made new contacts online, I have began to trust people more and made many new contacts and friends now #HAchat

FoodAllergyBuzz More comfortable over time. I feel passionately about the topic, I want people to take my writing and my blog seriously #HAchat

TiffanyAndLupus When I started out online in the health-o-sphere I didn’t think about anonymity. I told everyone I had lupus via FB status! #HAchat. I don’t know why I didn’t think of anonymity b4 sharing my health experience online. I guess my quest for community was stronger #HAchat


Actively Managing Your Share Preferences!

One of the problems with social media is that there’s so much sharing and so much interconnectedness that we don’t even realize what information is being pulled from our various platforms.  Social media plug-ins have made it so that you don’t have to sign up for an account at every website you visit, but do you really want all of your platforms connected?  What about apps and GPS authorization? It’s a good practice to check your security settings fairly frequently (about once per month) just to make sure that only the information that you want to be shared is actually being shared.

kimmieCollas: I’m always seeing links I’d like to follow, but can’t unless i allow the app access. Umm, NO, if i wanted that app, i’d have it #HAchat.  And i don’t use anything that requires GPS – I’m not hard to find, but folks don’t need to know where i am every minute #HAchat


Sharing as a Tool for Change:

Privacy concerns aside, there are so many exciting things happening in the online health community every day, and as we’ve discussed all month, the possibilities are endless.  The relative safety of talking about health issues on the internet rather than in person has empowered patients and started the e-patient revolution.  Social media has banded patients together to create change in a way that wasn’t previously possible.

Nevertheless, only you should be in control of how you participate in this revolution and what you share.  So like the advice we frequently hear from Health Activists regarding your care, be aware of what’s happening on all of your social media platforms and take control.  Only share what you’re comfortable with, but remember the power of sharing to foster a sense of community.  Remember that every time you share something on Facebook or Twitter, you’re helping to promote awareness and education.  And no matter how much you decide to share about your personal life or identity, you can still share the real you.  TiffanyAndLupus: Final Thoughts: Social media encourages and promotes community; this is needed in the space of health. Be you, be real and share.#HAchat


Thanks for joining us for our last #HAChat during Health Technology Month here at WEGO Health! Join us next week to kick start July’s theme of In Real Life (IRL)! Chats are every Tuesday at 3 PM ET.




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