We’re sure you remember the day you became a caregiver. Whether as a new parent or as a parent with a child living with a chronic illness/behavioral disorder/learning disability, or as a caregiver to a family member/loved one/spouse – the feeling is the same. Where do you start? What do you do with all of this information/test strips/medication/doctor’s appointments that have become your “new normal.” What happens when the idea of what you thought your life/marriage/family would be like changes completely? In retrospect, there are things that all parents/caregivers in the online community wish that they had known. Luckily, we had the opportunity to pick the brains of our many parenting/caregiving Health Activists and have lots of tips for those who are new to the scene.
Know this
You are not alone. There are others out there, right now, in your exact position. On top of that, there are countless others who are in a similar situation who understand what you’re going through. Know that though you may not know those others personally, they are out there, and they are ready to help. They are waiting in the virtual wings to answer all of your questions and guide you through the the journey that you are about to embark on. They are there to deal with uncertainty and fear, and to help you learn everything you need to know to be the best possible parent/caregiver you can be.
Momof2T1s: offline connections provide something that online cant but 4 every 1offline I have 10 online friends who have my back #HAchat
Know that it doesn’t exactly get better, but you get better.
Momof2T1s:: it never gets easier – we get better. & just because something has been one way doesn’t mean there isnt’ a better way #HAchat
Serenebutterfly: Wish I realised that although every day not be good but there’s something good in every day! Love this quote! #HAchat
Know that failure is not a possibility, but that you are going to make mistakes. It will take time to figure out the best way to care for yourself and the one that you love. Do your research; arm yourself with the knowledge to be a partner in the care team for the one that you love.
CaregiverSN: That it’s okay to make mistakes– it’s going to be a learning process for all involved. #HAchat
FeliciaFibro: that it would take years for me to figure out what works best for managing my #fibro – all of us are different. #HAchat
Know that you know your child/loved one best. No matter what doctor/healthcare practitioner/teacher/therapist that you are working with, you still know your child best. Trust yourself and your instincts. Robertssister1: We know our care the best; especially important in emergency situations.
Get online
Yes, even if the idea of having to spend more of your day in front of the computer makes you want to scream, get online. Get a twitter handle, do a hashtag search with your/your loved one’s condition, look for online forums, check out some facebook support pages/groups, go to yahoo groups. All of these resources will be your new support system. Because the internet doesn’t turn off. Sure, people go to sleep, but there’s someone on the other side of the world on twitter right now ready to answer your questions or provide support.
momof2T1s: – use a hash tag with chronic illness to locate others #HAchat
khuckabay: 1st thing is to register yourself on Twitter and Facebook if you are not already a member! #HAchat
Feliciafibro: look up what non-profit organizations support their conditions & contact them for tips, events,etc #hachat
Delving into the online community can be really overwhelming. You are going to have to wade through a ton of information and a ton of different support communities. Know that not all online communities are the same, and you may have to try out a couple different ones before you find somewhere that you’re comfortable sharing and participating.
kimmiCollas: not every group is comfortable, try lots until you find the right “fit” #HAchat
HealthcareNovel: Recognize that this participation in the online community is a journey. #hachat
Wegohealth: Great tip from a Roundtable: If something happens in an online cmty that you wouldn’t like IRL – leave. You’ll find better. #HAchat
Even if you may not be comfortable jumping into an online community, you have to get involved in order to know where you’re going to ultimately call your online home.
LALupusLady: lurking is allowed, give yourself a chance to test the waters. every one gets something else from the exp. #hachat
Khuckabay: jump in, don’t be afraid no one will bite #HAchat
LAlupusLady: My Social Media mantra from@JeffPulver “Listen, Share, Connect and Engage.” it works… #hachat
Mom2T1s: have a conversation – dont just tweet quotes/statistics or plug your own blog. 4 best results stay involved, retweet & reply #HAchat
Momof2T1s: xfiles says Trust no one – I say take everything w/a grain of sugar and it will eventually lead you to the right folks #HAchat
Looking for a specific place to start? Of course many communities are condition specific, but others have resources for many different conditions/communities. Here are some recommendations from Health Activists?
Serenebutterfly: I love @patientslikeme. It’s not only great to track your or you loved one’s condition you can reach out to others patients #HAchat
FeliciaFibro: for #fibromyalgia, I think the Arthritis Foundation @arthritis_org is the most reliable organization at this time. #Hachat
Serenebutterfly: Also @treatdiaries is great for sharing coping strategies and is also great as it’s anonymous #HAchat
Tmana; For type 1 diabetes: @TuDiabetes, JDRF, Juvenation, @childrenwithdiabetes (Children With Diabetes)… #hachat
Khuckabay: For diabetes I always recommend the ADA, JDRF, Blue heel society, #DSMA, Diabetes Advocates, and Tudiabetes #HAchat
Robertssister:: I found a wonderful community of caregivers at http://t.co/IXWE3Ta5; very welcoming, non-judgmental #HAchat
Finally, the beauty of the online community is that it’s so diverse. Caregivers/parents/Health Activists can connect with each other across conditions in ways that are not always possible IRL. So how do we preserve the engaging and supportive environment that we have created?
Serenebutterfly:: By keeping blogging, spreading awareness of the cause and by sharing tips on coping #HAchat
khuckabay: we can continue it by never turning anyone away, by keep the lights on, the doors open, and never stop learning more ourselves #HAchat
Are you a parent or caregiver that is active in the online health community? Do you have a blog? We are having a week-long blog carnival in honor of Advocating for Another Month (#A4AMonth) here at WEGO Health. Check out the Facebook event to RSVP and find the prompts, then tweet your posts using the hashtag #A4Amonth. Tune in next Tuesday at 3 PM for a tweetchat recap of the Blog Carnival!
RSVP Here: http://www.facebook.com/events/499044693445245/
