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. Depending on who you ask, not talking about it is the opposite of how to be authentic.
No, I’m not constantly in the hospital or consistently taking medications through an IV. But I also can’t escape this diagnosis. It affects some basic daily functions though it’s not too invasive. 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. It’s not because I’m ashamed. I’m 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 my life. Really – 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 a 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 think too hard about how to be authentic online and go out of your way to accomplish it, you’re not doing it right. Being authentic doesn’t mean spilling your life story. It’s about sharing yourself as you are with 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 have to explain your biology and medical condition to doctors who had never heard of it. It’s one of the reasons the holiday Rare Disease Day was created. It’s the day to raise awareness so policymakers 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 I said I don’t feel guilty every now and then for not talking about it openly. I know my story can help others. It’s just not how I choose to be authentic. The guilt sometimes builds when Disability Pride Month in July comes around. Some people conclude that not sharing my medical diagnosis openly makes me selfish and ashamed of my medical condition. However, that couldn’t be farther from the truth. It’s simply 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 part of my private life. Being honest about what I feel comfortable and uncomfortable sharing doesn’t make me less authentic online or in person. It’s that honesty that makes me even more authentic.
I liken it to the Me Too movement. We applauded the creator of the movement and those who boldly, posted on social media 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” via popular methods, be comfortable with their decision to refrain, and still hold their testimony close to their heart. It’s possible those who don’t share are still processing their emotions. Maybe they 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, judgments, and internet trolls. I’ve already healed, and just don’t feel comfortable sharing. 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, reframing life, and sometimes life as a freelancer. 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. It would probably get me lots of likes and follows too. 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 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 when I don’t share. 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 the ability 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 earning a yearly salary of $250,000 and living with your mom rent-free, 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 you’re too busy trying to become the person you think others want to see as opposed to showing the person you really are. So much of authenticity revolves around acceptance from others and therefore only showcasing things that will only fuel your ego. Additionally, “authentic” began aligning with an “all or nothing” approach or the belief that you can do only one thing. That’s the problem with perceived authenticity. It’s a flawed concept. It’s somehow aligned with what you want others to see as opposed to who you really are. The evolution of being authentic ignores the fact that two things can be true at once. Acknowledging that fact isn’t just honest, but it’s a true reflection of how to be authentic.
The best way to be authentic is to accept who you are and share what feels right regardless of the number of page views or how loud the applause is. 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 stories. I applaud those who live with their story and diagnosis privately. I applaud those who still haven’t figured out how they feel. All come with their own consequences and require a special type of strength and self-awareness. 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 too much of yourself online sometimes? Do you think “authentic” has lost its meaning?
Terrific Quip – Learn to love yourself as you are.