Repeat after me: I don’t owe my story to anyone
I don’t talk about it much, but I was born with a rare birth defect. Only one in 100,000 people are born with it and it affects almost every aspect of my life. No, I’m not constantly in the hospital or consistently taking medications through an IV. But I can’t escape from it. It affects some basic daily functions though it’s not too invasive. And it also affects the way I sympathize with others, how I view the world, where I can live, prenatal care, my relationship with my spouse, friendships and more. While this birth defect is such a big part of my life, I don’t talk to anyone about it. And it’s not because I’m ashamed. I’m honestly very proud of who I am and how far I’ve come because of this medical diagnosis. I survived a truly life altering surgery within the first 24 hours of life. Honestly, to say I’m proud of myself is an understatement. But rare medical disease aside, the influencers of the world might say I’m an oddity for not sharing it openly. Some might say that my decision to keep it private is not an example of how to be authentic.
We live in society where we are expected to be authentic at all times – aka spill every intimate detail of our personal lives to prove we really know how to be authentic and offer transparency. Newsflash: I don’t owe my vulnerability to strangers on the internet. Nobody does. There are even some members of my family who don’t know about my complex medical history. And I prefer to keep it that way. It’s hard and there’s a lot of conflicting emotions when choosing to be “authentic,” but there shouldn’t be.
I always say, if you have to think to too hard about how to be authentic online and go out of your way, you’re not doing it right. Being authentic doesn’t mean spilling your life story. It’s about sharing yourself as you are to those who deserve it. To some it might mean being vulnerable and sharing guarded thoughts about a breakup or job loss. For others it might mean talking about the joys of cooking or the disappointment of losing a game. And for some it might actually be discussing what it’s like dealing with a specific medical condition or trauma. But it’s up to you to decide what feels right despite what seems trendy.
For me, it doesn’t feel right to discuss my medical past. Living with a rare medical condition means dealing with not only a complex medical history, but complex emotions. It’s an interesting feeling knowing you may never meet someone who has the same medical condition as yourself (though I’ve become great friends with one) or routinely having to explain your biology and medical condition to doctors who had never heard of it before you. It’s one of the reasons the holiday Rare Disease Day was created. It’s the day in which we raise awareness to policy makers and those around us about the medical conditions that don’t get as much discussion. It also forces the public to see the many ways in which people may be suffering silently. Rare Disease Day is celebrated on a rare day, February 29th, and honored by wearing strips and sharing your story of a rare disease. Though, I choose to live with my rare disease privately, it’s a day I hold very close to my heart.
I’d be lying if every now and then I don’t feel guilt for not talking about it openly as I know my story certainly can help others. It’s just not how I choose to be authentic. I don’t talk about it because my rare condition is a big part of who I am but it isn’t all of me. I don’t talk about it because sometimes the burden of having to explain all that it entails and what it means for me is just too much. And I don’t talk about it because I’m happy keeping it as part of my private life. And it doesn’t make me less authentic online.
I liken it to the Me Too movement. We applauded the creator of the movement and those who boldly, posted on Twitter, Instagram or Facebook with the words, “me too”. Those who chose to do it acted in a way of self assurance, selflessness and bravery. But equally as brave were the ones who could relate and chose not to share. It takes a special person to resist the pressure to be “authentic” in the way everyone else is, be comfortable with their decision not to and still hold their testimony close to their heart. It’s possible those who don’t share are still processing their emotions and decided it’s not the right time to share so they can heal. Maybe some see sharing as their way to heal. Or maybe there are those like me who are comfortable with their hand, but don’t feel like dealing with a plethora of questions, judgements and internet trolls. I’ve already healed, and just don’t feel comfortable sharing. And though, I know sharing what I’ve been through matters, I’ve decided it’s best I don’t at this time.
Instead, I choose to talk about my motivation, family, happiness, paying off debt and sometimes wine. That’s what feels right to me. Sure, a bare all story about my medical condition and how I triumphed in the end would be the feel good story people would love to read and get me lots of likes and follows, but it just doesn’t feel worth it to me. There’s a fine line between bearing your soul to help others and feeling as though you sold your soul to the Instagram gods for a few likes and extra follows all with the hopes of potentially going viral. You don’t need to exploit yourself to be authentic. Sometimes it’s just not worth the effort and the 15 minutes of fame. Plus, if you’re only doing it for the fame, it’s questionable how authentic you really are.
And of course, there are those who say I’m not being transparent enough by not sharing. Yes, those who give advice in some regard do have a responsibility to be transparent with those they are guiding. For example, if you are one of the many personal finance bloggers boasting about how you were able to pay off $100,000 in debt in two years and tell people to do what you did, but never mentioned that you’ve been living with your parents rent free the whole time, you are doing a disservice. However, if what you achieved or preach isn’t contingent on your personal circumstances, you shouldn’t feel the pressure to share and “be authentic” in that way because others inexplicably expect it from you. Find comfort in knowing that what you already shared is authentic enough.
The trouble with trying to be authentic is that we’re so busy trying to become the person we think others wants to see and not showing the person we really are. So much authenticity revolves around acceptance from others and therefore only showcasing things that will only fuel your ego a tad. The best way to be authentic is to accept who you are and post what feels right regardless of the amount of page views. In time, people will recognize who you really are without sharing every personal detail of your life. For me, that means sharing the lighter sides of my life and keeping the television worthy yet, complex details of my medical history private. It may be private, but I’m doing it with pride and will always feel a closeness to my other silent survivors of rare diseases.
Regardless, I applaud the people who choose to be open and share their story. I applaud those who live with their story and diagnosis privately. Both come with their own consequences and require a special type of strength. Regardless of what you choose to do, make sure you do it for you. Sharing or not sharing doesn’t make you any less authentic online or in the real world.
And though, I’m one of the many who choose not to share my story openly and publicly, I will certainly be wearing my stripes proudly in honor of myself and others living with a rare medical diagnosis and going through life as they see fit.
Do you have trouble with being authentic? Do you feel like you share to much of yourself online sometimes?
Terrific Quip – Learn to love yourself as you are.