Why I'm So Open About My Health on Social Media
I often see people struggle with sharing their health online. Not wanting to overshare. Needing to share. Needing the support from their friends when their body and parts of their life feel like they are out of control. Sharing too little. Sharing too much. Having “friends” or family tell them they are whining too much, or just want attention.
If someone is sharing their personal pain online with their friends, the last thing they need is for the people they’ve shared with to add more pain.
They need support. A hug. A listening ear. Someone who says, “I hear you! I see your pain. I love you and I want you to know that!”
Often, though, that’s not what people get. So, they become afraid to share. Social media becomes this cotton candy fantasy land of perfect lives.
But not my social media. I’m extremely open. Some would probably say too open. I’m not sure about that, though, because if they think that, they are being respectful of me and keeping that to themselves. I share almost everything. The good, bad, silly, funny, sad, awful and the fanciful. And I receive overwhelming support from my friends.
So, I wanted to find out why. Why I’m lucky enough to be able to be “TMI,” without being pulverized emotionally. I asked my friends if they’d be willing to comment how they feel about how extremely open I am and what that makes them feel about me. Positive or negative. What their impressions are of my sharing.
These are the things they said:
“You are positive, supportive, compassionate. Even when life keeps throwing you curveballs you keep trucking along. You are honest and share your moments of frustration but don’t wallow in it.”
“Open. Human. Real. Honest. Perfectly imperfect. I appreciate how open you are about things. Sometimes I hesitate to be open about stuff because of how some family may react, but seeing how open you are has helped me be more open. The two most negative people towards my posts are a family member and a friend. So I tend to screen from that friend and family. Sometimes it means changing who can see it and sometimes it means not posting at all. But you have helped me see that this can be more of a forum as I have always felt it could be: to help people.”
Another comment spoke about how they don’t get the support from certain people. That it is difficult for some to come to terms with people who will never “get better.” So they are unable and unwilling to share with these people. That they post all things, positive and negative, showing reality, but after a decade of illness some in their life can’t handle it.
This all leads me to feel that I’m glad I’m so open, I’m lucky my friends support me, but, more importantly, the people who aren’t supporting you, who say nasty, judgmental things after you share your pain or reach out for support, are actually the ones with a problem. They are unable to cope with seeing a friend who will never get better. It doesn’t make them a bad person – it is hard! But it also doesn’t make it wrong for you to share your health struggles. If they can’t handle that pain, the hurt you actually go through, of course they will then judge you. When we are uncomfortable, we often lash out at what is making us uncomfortable. But don’t let that make you judge yourself. You are not too needy, attention-seeking or too depressing. You are real and some people will appreciate that for the gift it is.
The other thing I’ve decided is that it’s important to try to keep a balance. When really ill, it can be difficult to see the beauty around you, but it is there, even if it’s just a gorgeous sunset. If you want to share who you are with your friends online, share all facets of you. Share your trials, your joys, your embarrassments and your loves. You are not only a sick person, so share all of who you are with your friends.
And if any of them don’t like it, or are rude to you, use that nifty little option to block certain people from seeing certain posts. When you need support, love and understanding, you deserve to get those. Any who make you feel bad for being a human with feelings and the need for kindness are not the kind of people you can rely on for the support you are looking for. Self-care. You deserve caring, sensitivity and true friendship.
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Thinkstock photo via milicad.
Lisa Prins is a binge hobbiest who is constantly throwing herself into many different projects. When she is not well enough to do one, she will find another. Music is her main love. She is a classically trained pianist, vocalist, songwriter, composer and ukulele player. She also enjoys writing, drawing, painting, crocheting, pixel bead art, photography, jewelry making, sewing, playing video games, robot building, and a number of other hobbies. Love, compassion, friendship and understanding are most important to her. They are what gives meaning to her life. Lisa was born with a congenital kidney disease called renal tubular acidosis. This combined with asthma, chronic infections, idiopathic angioedema and anaphylaxis have shaped her into a person who is thrilled to experience every bit of life and love, every sunset and every little joy that life has to offer. She lives with her incredible partner, who is, and has been, her love, her best friend, and, at times, her caregiver. She decided to start contributing her writing in the hopes she can help others know they aren’t alone, and help those who aren’t chronically ill better understand the people around them who are.
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