In this day and age, community has taken on a new meaning. Nearly everybody in the world is logged into the internet. Social media sites like Facebook and Twitter, as well as search engines like Google and Ask.com, have made it possible for us to find and relate to others like ourselves, whatever that connection might be. In this instance, I'm talking about everyone whose life has been impacted by CHD.
About three years ago I stumbled on a Facebook group made up of adults with CHD. I was excited, thrilled and amazed to have found 75 people who had similar experiences as me throughout their life. I already knew that I wasn't the only person with a CHD. I had met others briefly during my life, but had never made a real connection. It was the thing we didn't talk about, the elephant in the room. Here, however, was a whole group of people who belonged to a group for the sole purpose of talking about it and helping each other out.
It didn't take long for me to make some real friends with a few of these people. It wasn't long after that one of those friends introduced to ACHA. Another friend later told me that they were looking for bloggers and thought I would be good at it. I thought it was a great opportunity to give back to the new community I had found.
I was right. It is fulfilling to write every month and share my outlook on life. To maybe change the way a person is feeling at the moment by asking them to look at their situation just a little differently.
Even with all this online support available, sometimes it doesn't seem like enough—sometimes you still feel helpless. For me, it's the waiting. Waiting for test results, waiting for surgery, waiting to heal and waiting for the surgery to be over for the friends and family. If you have ever felt that way, then the solution is simple—get more involved in the CHD community.
Do what I did. Take a long weekend and participate in Advocacy Day. It only takes up 2-4 days depending on travel and it is one of the single greatest events I have participated in. The sense of friendship and camaraderie among the people there is amazing. More importantly, at the end you feel like you have really accomplished something to benefit CHD patients. It erases that helpless feeling you might have had.
For the veterans in the community, I know you understand all of this. For those who are new, the answer is simple. Get involved. Search the web. Find a support group that works for you. Find a way to give back and help someone else. You'll feel better about yourself and about CHD when you realize that you are not alone and that others will be there for you and you can help them.
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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.
The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.