Continuing our discussion of IRL Health Activism, this week’s #HAchat focused on the intersection between the online and offline Health Activist community. Logistically, offline advocacy was around long before online advocacy. After all, the internet is still relatively young, and online patient communities as we know them today are still developing. While some Health Activists were able to take advantage of the anonymity of the online community from the get-go, others had no choice but to seek IRL support.
CIRants: Offline came first – there was no “online” back then! #HAchat
TomKindlon: Mainly offline. We ran the first #ME Awareness Week in Ireland back in 1996. Only tiny bits of online stuff for first few years. #HAchat
FeliciaFibro offline interaction,mostly because it was 11 years ago & there wasn’t a lot online for #fibromyalgiathen. #HAChat
We have discussed time and time again the benefits of the online community: immediate access 24/7, anonymity, endless contacts and resources…but we always discuss this subject as if online and offline activism (or life) are mutually exclusive concepts. Believe it or not, that person whose blog you’re reading has a whole life on the other side of their computer. How these worlds overlap and how Health Activists balance the commitments that have to online and offline relationships is a different story.
What do the people in your real life think about your Health Activism?
For the purpose of this discussion, let’s assume that your friends and family know about your blog, your community, the online forum where you participate. Let’s also assume they have little to no idea what you do as a Health Activist, and that your online and offline lives are relatively separate. Many Health Activists in Tuesday’s chat commented that their friends and family didn’t really read their blog, or that they would keep their Health Activism separate from their personal social media accounts so that their followers don’t get bored. This is understandable, while friends and family certainly want to know about your health and how you’re doing, they probably aren’t going to be super interested in recommendations for safe trick or treating when your kid has food allergies if that isn’t something that affects them.
FoodAllergyBuzz. My family knows about my #foodallergy blog & activism as well as a few friends. I don’t think any of them follow it, & that’s OK #HAchat
FeliciaFibro: yes, they know I have a website & separate social media focused on #fibro & that I interact with other spoonies.
KirstenWalters: Most people know I have an illness, blog about it, and do Arthritis Foundation walks… not that many are interested in helping! #HAchat
AfternoonNapper My father has also told me that he specifically chooses NOT to read my blog bc it hits too close to home for him. #HAchat
FeliciaFibro @AfternoonNapper that is how The Helpful Hubby was for the first 1-1.5 years, then he started reading it more often. #HAchat
TomKindlon: I set up 2 FB accounts to split off my #MECFS activism from my friends and family so they wouldn’t be bored. #HAchat
How does it make you feel to keep such a big part of your life so separate? Keeping your personal and Health Activist accounts separately can definitely be useful in terms of organizing your online social media presence, but it’s ok to speak up and tell your other followers, friends and family about what you’re trying to do with your blog or your Facebook page. Health Activism doesn’t get enough recognition as it is, so bringing a little bit of your online crusade IRL can spread awareness of the power that Health Activists have to incite change!
Having it all
Obviously your Health Activism isn’t the only thing you have going on in your life. You have family and friends vying for your time, doctor’s appointments, jobs, volunteer activities. You need to clean and eat and rest and exercise. How do you do all of these things AND spend hours a day blogging, emailing, looking for content and research? CIRants was interfering with my real life, then real life interfered with online life; still looking for the balance. #HAchat Like anything, it takes practice and knowing yourself well enough to know what you need in your life to stay happy and healthy. Health Activists had some tips for maintaining balance:
FoodAllergyBuzz During the school year, online work/advocacy happens early in the morn b4 work, or in the evening #HAchat
serenebutterfly I tend to have a specific time in the day to write my blog, or tweet or spend time on Facebook and then make time for chores
Your online world and your offline world are not mutually exclusive. Your real life interactions help to shape your presence online and vice versa. And your online presence and the experiences that you have online will shape that way you address your condition IRL. Overlap between them can take many forms, most basically in the sense that your online relationships have the ability to turn into IRL ones. HealthcareNovel It’s been fascinating for me to see how online activities can lead to those ‘real’ interactions in daily life. #hachat
It’s about balance
Having it all is all about balance. Everyone has to find what works for them. Here are some tips from Health Activists about finding the right way to have fulfilling interactions both and on and offline:
FoodAllergyBuzz I would say, start small. Get a sense of how long you spend online and how much time you have to devote to being online.
serenebutterfly: Always schedule time for ‘you’. Relax and have a nice soak in the bath, or spend time with friends over coffee, watch a film
treatdiaries it takes time, go slow, be consistent and just focus on building trust. #HAchat
Remembers that it’s ok to get frustrated. Remember that other Health Activists are there to offer support and advice about how to find your balance:
AfternoonNapper It seems that just when I’m getting REALLY frustrated & overwhelmed, I hear “you don’t know how much this has helped me. That said—don’t forget to encourage other advocates. We all need to support one another’s support efforts.#hachat
Remember that there is value in each relationship that you have, whether it be on or offline:
It’s easy to get caught up in what you’re doing, especially when you’re starting to get to know new people or you have recently discovered a group that you really identify with. As such, when you’re delving into the online community, don’t forget the value of the relationships that you have IRL. HealthcareNovel Recognize that online will always be 24/7 so just find your space and do your best – people will be there when youre ready #hachat Just because you can talk to an online friend any time doesn’t mean you shouldn’t save time to make a meal with your friend from work. Just because your online friends “get it” doesn’t mean that that IRL friends can’t offer words of support and advice, or even offer an escape from thinking about your condition. Just because it’s easier to open up to your online friends doesn’t mean that you shouldn’t try to educate your IRL friends and family. After all, how can we spread awareness if we don’t reach out to those outside of our communities?
Be sure to join us next week as #HAchat participant, author, and bridger-of-gaps-between-physicians-and-patients Robert Green (@HealthcareNovel) hosts. We’ll be tweeting at 3pm ET on Tuesday, July 31st and hope to see you there!






















