This is a sponsored post in collaboration with the American Heart Association; all opinions are entirely my own.
Before Online Support Groups:
I am driving down the street, as our song comes on the radio. It’s Jason Mraz’s “I Won’t Give Up.”
“I won’t give up on us
God knows I’m tough, he knows
We got a lot to learn
God knows we’re worth it”
“I won’t give up on us
Even if the skies get rough
I’m giving you all my love
I’m still looking up”
It’s impossible for me to sing those lines without my voice cracking and I’m having to swallow a big ball of tears.
I listened to that song, on repeat, during the eight weeks our son was in the PICU fighting for his life – it became our fight song.
I never gave up on him, never for a moment. I didn’t know what the future held for him, but I knew it would include happiness, and lots of it. The first eight weeks of his life were some of the loneliest of mine.
I sat bedside, by his crib day and night. I tried to sneak off to my room at the Ronald McDonald House to get a decent night’s sleep, but I always regretted it, because some medical emergency happened while I was gone.
Back then, I wasn’t on social media. Facebook was in its infancy. Texting was a luxury as it cost $0.05 per text, which adds up very quickly if you have a lot to say – and I did. Instead of communicating with the outside world, I internalized, sang to my baby and prayed for his future.
It wasn’t until a year out from his discharge that I asked his cardiologist if there was a support group available to caregivers – such as myself. Reluctantly, he told me “no, but there should be.”
When I realized there wasn’t a support group, I decided to start one of my own. The group became a great success – because, yes – there was a need. However, as any heart family will tell you: leaving the house, adding another appointment to your schedule and exposing your family to germs are all reasons to just stay home and not go anywhere, even when you long for and NEED support from people who “get you” and know your journey.
How Online Support Groups Changed Everything:
Cue the online support groups, such as the American Heart Association’s Support Network! Over the past eight years, online support groups have truly become my go-to place for encouragement, relevant guidance and peer support.
>>> Check out the Support Network! (It literally takes 2 minutes to sign up and it’s free!
In a good online support group, like the one offered by the American Heart Association’s Support Network, you make friends across miles, regardless of nationalities, beliefs or language barriers. Your common denominators are a medical diagnosis, hope for the future and a willingness to celebrate victories and mourn losses each and every day.
Joining an online support forum can be life-changing, it was for me. However, before you dive head first into the deep end of the online community, decide how YOU best can benefit from others in the group – and thereby make the online support group your village!
Sign up for an account with the Support Network today! They more than likely have a group for patients and caregivers affected by your specific heart condition.
10 Tips to Get the Most out of Online Medical Support Groups:
- Give more than you receive. From the moment you log in, be prepared to offer support, thoughts and prayers to others much more freely than you request them for yourself. Don’t worry – this comes naturally.
- Spend some time quietly getting to know the other members by reading past and current posts. As with any community, there are always a melting pot of personalities represented. Getting to know the dynamics before you jump in a conversation may save you from misunderstandings and awkward situations – trust me, I am speaking from experience.
- Comment genuinely with well-wishes, kind thoughts or prayers – which ever fits your personal preference.
- Leave the drama at the doorstep and bring lots of empathy. Everyone in a medical support group is there because they or a loved one is affected by the specific medical condition. Sometimes people are tired, in pain, scared or sad and they may not always reply kindly. Make an effort not to take offense or engage in drama. Bowing out gracefully from an argument is always in both parties’ best interest.
- Remember that every person’s medical situation is different, even if you share identical diagnosis. You don’t know the other person’s complete medical history and background, so don’t give medical advice. Instead, you can word things like “this has worked for me.”
- Do NOT ask the group for medical advice, especially not for life threatening situations. If your baby is having labored breathing, please call your pediatrician or cardiologist and send them a video – instead of sharing the video in an online support group.
- It is perfectly fine to keep scrolling if a discussion breaks out over something you strongly disagree with. Vaccines is always a hot button topic. However, I have found that in the heart community, most families err on the side of disease protection for their heart heroes. However, if you have an opposing view, feel free scroll right past the post.
- If someone in the group has a medical test, procedure or something else they have expressed nervousness over, feel free to follow up with that person. Tag them in a post the day after the appointment and ask how things went. Kindness and thoughtfulness goes a long way.
- Do not criticize medical decisions or medical professionals openly. If someone is seeing a doctor you have had a negative experience with, you can consider private messaging the person to tell them your story. However, “bashing” others in an online forum may cause more damage than good. Imagine if someone truly loves and trusts their medical professional, but your personality clashed with his, so therefore your experience was less than stellar. Physician choices are personal and someone’s life may depend on the trust they bestow in their medical specialist. So tread lightly when you have a negative experience to share. (Of course, sharing medical negligence with others may save lives, however, it should be done carefully and preferably in a private message.)
- Once you get a lay of land in the group, introduce yourself or ask a question to show the other members that you aren’t just there to lurk and be a peeping Tom, but that you need them as much as they need you. You get as much out of a medical support group as you put into it.
As part of your daily dose of self-care, sign up for the American Heart Association’s Support Network and find a group for patients and caregivers affected by your specific heart condition. There is so much love, support and encouragement to be found in that little corner of the internet. Give yourself the gift of hope today!
What is your favorite aspect of online support groups? Please share a personal story in the comments.
Don’t miss the personal story of how our heart journey started – and find out the four words that changed me forever: