Why Social Media Is My Heartache and Motivation in Life With Congenital Heart Disease
What do you think Mark Zuckerberg’s vision was when he set out to connect the world?
If it was to connect those suffering the daily blows of chronic illness, he succeeded.
If it was to show me the beautiful triumphs of those living with congenital heart disease (CHD), he succeeded.
If it was so I could see the children with CHD who have lost limbs and never give up, he succeeded.
If it was to show me the real meaning of pain and suffering, he succeeded.
If it was to teach me how much love is in this world, he succeeded.
If it was to leave me heartbroken with a simple notification, he succeeded.
If it was to remind me daily of the blessing in this world, he succeeded.
If it was to show me all those tormented by CHD, he succeeded.
If it was so I could have a seat in the living room of all the babies growing up with CHD, he succeeded.
If it was so I could see pictures of lifeless children, he succeeded.
If it was for me to find those that need a helping hand, he succeeded.
If it was to harden my skin to life, he succeeded.
If it was for me to have a platform to share my story, he succeeded.
If it was so I could see the open chest and beating hearts of babies, he succeeded.
If it was to give me motivation and support in my own journey, he succeeded.
If it was for me to find more friends, just to lose them, he succeeded.
If it was to remind me to pass on the small annoyances of life, he succeeded.
If it was to reinvigorate my faith, he succeeded.
If it was to leave me dejected and inspired in the same breath, he succeeded.
“Although the world is full of suffering, it is also full of the overcoming of it.” — Helen Keller
I know many use social media as an escape, somewhere that the world can stop spinning for a minute, somewhere they can have an alter ego. For me, it is often the most real part of life, a place that feels like it is spinning out of control. What do you say to the fifth parent of the day agonizing over the reality of their child’s prognosis? What can you offer when your heart is broken, too?
What do I do when I feel defeated with CHD?
Get on social media, of course, and keep looking for those beautiful stories of those with the courage to overcome their suffering. It is the best way to reinvigorate my soul, so I can be my best self for those that need my help.
Getty photo by Halfpoint
Joe was born with a congenital heart defect called Tetralogy of Fallot. He required his first open-heart surgery at 54 hours old and suffered a stroke after surgery. He has now had four open-heart surgeries, the last two days before his 30th birthday. He has struggled with anxiety for most of his life and believes a strong mind and building a team with a roster full of supporters is the key to successfully living with a chronic illness. He is a Board Certified Patient Advocate for families, children, and adults with congenital heart disease—helping them to navigate the emotions, diagnoses, and challenges they face in finding and understanding appropriate CHD care.
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