The folks over at NewLifeOutlook reached out to me a couple weeks back about writing a guest post for my blog. When I asked them what they had in mind they said they wanted to put together a list of online forums and communities for afibbers. I thought it was a great idea. With that, they wrote the following post for your reading pleasure:)
December 2017 Update: I recently wrote my own article on this topic. Get the updated list of the best a-fib forums, blogs, and websites for 2017.
Connecting with Other AFibbers Online
Atrial fibrillation can be an isolating condition. It’s natural to lose out on lighthearted social connections when you’re worrying about palpitations, or teetering on the edge of anxiety. However, reaching out for a helping hand can bring real physical rewards.
Support groups have been around for quite a while, and for good reason: a shoulder to cry on or a friend to lean on can make a crummy day way more tolerable. But with technology advancing so quickly there are more and more virtual outlets for socializing. You can even get AFib apps for iPhone and Android devices. That means you don’t have to leave the comfort of your own home to find the comfort of an understanding community.
How Virtual Support Can Make a Difference
Getting the help you need is always a good idea, but online AFib communities allow you to give back, too. In fact, that interaction is what can sustain hope, optimize your approach, and push you to get proactive in your AFib management.
Sense of Belonging
Although it can seem like a small part of the puzzle, a sense of belonging — of being a valued part of a community — can be incredibly important when you’re living with a chronic disease. Many people with AFib find it difficult to share concerns or seek comfort from friends or family, since they can have difficulty understanding the physical symptoms and emotional fallout of the condition.
Don’t underestimate the power of an understanding friend, even if you’ve never met face-to-face. When you can talk about whatever comes to mind, without the need to explain or justify your feelings, you might just find that you express yourself differently, and will genuinely enjoy the dialogue.
Atrial fibrillation is an anxious disease. It makes you anxious, it’s triggered by anxiety, and the symptoms are physically worrying. It’s not unusual for sufferers to get caught up in the anxiety, tending to every small discomfort and jumping to worst case scenarios.
One of the best things a support group can do for you is ease that worry. Simply talking to other people with similar symptoms (and the same concerns) can be enough to release the pressure that’s building in your own psyche. Even if you can’t find a solution together, at least you can share some empathetic thoughts and advice, and that can boost your resilience.
AFib can steal your self-confidence, motivation, and ambition. It can leave you feeling like you have little control over your body, and by extension, your daily life. However, connecting with people that have walked your path before can shed light on treatment options, challenges to expect, and inspired coping mechanisms. When you can draw on lots of knowledge and wisdom, you can stay one step ahead of your opponent.
Developing control over your situation doesn’t mean you single-handedly overpower your Afib. Online support is not a replacement for your doctor’s orders. Instead, you make small gains, like learning better ways to calm your nerves during an attack. You can also offer your advice to others who might be looking for answers, which can be just as empowering.
Popular Forums and Communities for AFib Sufferers
The internet is vast, and there are plenty of places you can go to discuss all sorts of dilemmas. Of course, it makes sense to seek out people who understand precisely what you’re going through; AFib forums are your best bet for building friendships and grabbing some welcome advice.
Here are some great afib forums and communities to begin your journey:
AFib Town. A big, bright site full of informative resources and plenty of tips to keep you on a healthy path, Afib Town is certainly one of the most comprehensive and visually interactive AFib sites out there. If you’re looking for variety, you’ve come to the right place: here you’ll find lots of updated forum discussions coupled with medically-edited info at your fingertips.
AFib support group on Daily Strength. This is THE place to go for active health and medical community forums. Not surprisingly, Daily Strength has a popular AFib community, which means there are many people there all the time to help and support a newcomer. Topics range from casual complaints to technical discussions on medication and procedures, so you’re bound to find a thread that suits your style and your needs.
Important Update on 9/9/16: Daily Strength is no longer THE place to go. In fact, this resource should be taken off the list. Why? They recently launched a redesign making the forum virtually useless. They have lost practically their entire audience on their afib forum because of it. What used to be such a simple and easy forum to use is now difficult to follow and impossible to navigate through. It’s such a shame too because it was a good forum but it’s a ghost town now since the redesign launched.
A-Fib.com Support Volunteers. Unlike other open forums, this service on A-Fib.com links AFib patients with other long-time patients who have undergone successful treatment, and have managed to maintain a happy and successful life with AFib. One fantastic aspect of this one-on-one relationship is the attention you receive, plus the hope that you’ll eventually make it to the same stage of recovery as your volunteer.
AFibbers.org. Running for 16 years, AFibbers.org is the oldest online AFib community in existence. It may look dated, but the forum is very much active and holds a vast amount of knowledge. For some of the best in-depth AFib management and treatment information, AFibbers.org is a must-visit.
Atrial Fibrillation Support Forum on Facebook. If you’re looking for sound advice and discussion on social media, check out the Atrial Fibrillation Support Forum for up-to-date information.
Finding Your Place in an Online Forum or Community
Although it can be tough to join in an online group for the first time, once you get the hang of the forums, you’ll know where to go for whatever you may need. In order to build a base of friends and get the support you’re after, you should approach any community with realistic expectations and a generous attitude.
Don’t expect sound medical advice. Unless the group is moderated by a medical doctor (some are), it’s important to take any advice as a suggestion, not a prescription. Freedom of expression is a great aspect of any online community, so there will be lots of strong opinions parading as facts, and plenty of enticing treatment alternatives. Remember that your doctor and health care team are still in charge when it comes to deciding on medications and invasive or non-invasive treatments for your AFib.
Do give back. Popping into a forum to ask a question is absolutely encouraged, but try to balance out your requests with kind support and offers of advice when others are searching for answers. Simply relying on a community whenever you need reassurance is a one-sided relationship, which is not the healthiest way forward. Reach out to a stranger’s posts now and then, or start a supportive thread. You’ll find small gestures go a long way to forging connections, and building your own self-confidence.
Keep an open mind. If you’ve been handling your condition on your own for a while, you might be somewhat set in your ways. It’s common to assume you know what’s best for you – in many cases, that’s absolutely true. However, there’s a wealth of experience, perspectives, and opinions out there, and it’s never a bad idea to entertain some new ideas, especially when you’ve hit a dead end in your disease management. Just be sure to check with your doctor before making any sweeping changes to your AFib treatment plan.
It takes time to carve out a place in a community, and while there are many rewards to come, changes don’t often happen overnight. Instead of a curative measure, consider your online community a long-term tool to help you handle your Afib in healthier, more effective ways.
Angela Finlay is a freelance health writer who believes that variety is not only the spice of life, but essential for happiness and longevity. As an avid runner, rock climber, artist, and vegetarian cook, her passion for health and vitality stretches into each corner of her life. You can find more of Angela’s writing on NewLifeOutlook.