It doesn’t matter when or where I tell someone I have lupus, the reaction is always the same. The person’s face will drop as they realize I’ve just shared with them that I have a illness I’ll live with forever. Cue the onset of sympathetic and pitied glances.
But I don’t pity myself.
Lupus has been my most life-altering experience. However, in my almost 21 years, it also is the only thing that’s ever made me feel fearless.
Call it morbid, dire or just realistic, but I’ve already faced the reality that I know what I’m most likely to die from and, although it probably should, that in itself doesn’t scare me.
What I’m scared of most is what I can control. I’m scared of turning away things that one day could be memories and experiences worth looking back on. I’m scared of not using the time I have to its greatest and fullest potential. I’m scared of taking the easy road and not pushing the limits whenever and wherever I get the chance.
Recently I read a quote by writer Theodora Goss that really spoke to me:
“I think there is a certain age, for women, when you become fearless… It’s not that you stop fearing things… But you stop fearing life itself. It’s when you become fearless in that way that you decide to live. Perhaps it’s when you come to the realization that the point of life isn’t to be rich, or secure, or even to be loved — to be any of the things that people usually think is the point. The point of life is to live as deeply as possible, to experience fully.”
This passage hits so close to home for me because this is where I am now in my life.
Fearless in facing the future
Since being diagnosed with lupus it’s as if I’ve been given a snap preview of what my final scene might look like, and having to face my own mortality has left me liberated and fearless to live my life as who I am and as I choose.
I’m proud to be exactly who I’ve grown into, regardless of what the rest of the world may think of me.
I’m proud to be intelligent and outspoken, to hold my own opinions no matter how controversial they appear to others, to always be open-minded and willing to take part in dialectics.
I feel fearless to defy the constrictions that society wants to place on someone in my situation.
I’m not ashamed to live with lupus. It’s not something I ever had, or will have, conscious control over, and being diagnosed with it won’t ever make me any less.
I can’t say that I live free of fear in every aspect of my life, but I’ve started with my identity and each day I come a little bit closer to taking complete control over what is mine.
May 23, 2016 was the day my life inevitably changed, but it was always up to me whether I would let my illness affect my life for better or for worse.
I’m choosing to see silver-linings wherever and whenever I can, not only because of my natural optimism, but also because it’s not the big things that truly matter, rather it is the small things.
I’m taking this journey one step at a time, knowing that I’m likely to face adversity at any moment. But I do so fearlessly committed to who I am and with the knowledge that I’m constantly turning my greatest struggle into what someday will be one of my most valuable strengths.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.