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How My Lupus Flares Taught Me To Be Vulnerable and Embrace Reality

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Those of us with lupus and other chronic illnesses understand that our bodies will betray us, will drop us into flood waters of flare symptoms and drug side effects. We understand that our bodies will let us down — that even on good days, we’re still vulnerable underneath. That’s a hard way to live life, but we do it because it’s the life we have, and often, we have people depending on us to keep living that life as best we can.

Flares are awful, and sometimes, they’re life-threatening. That’s the reality. Hard, vulnerable, reality.

I was hospitalized a couple of months ago with the most severe flare I’ve had since my diagnosis four years ago. A cardiovascular and pulmonary event that produced severe tachycardia, blood clots, and pneumonia. It was incredibly frightening because it happened quickly and with no warning.

I had only mild symptoms — a typical good day — just hours before everything crashed, but what was equally frightening was realizing that my young daughter was going to witness the whole thing. My hospitalization, my inability to breathe effectively, my heart monitors whose alarms sent teams of doctors and nurses into my room frequently to dose me with more beta blockers and heparin.

Vulnerability. Reality.

Hard reality and vulnerability are valuable teaching tools, but it’s not the way that we want to learn. We romanticize learning and teaching. If I asked you to imagine a classroom, you’d probably see a brightly lit and decorated room, abundant technology, a smiling instructor at the front and engaged students organized into neat rows of desks.

The idea that learning brings happiness and order. But the deepest, most transformative teaching and learning opportunities so often come in the most humble, most vulnerable of moments. The situations and places in which we’re at our worst, most disordered, and in which we have to figure out how we can teach ourselves to navigate the circumstances before we can help others to do the same. So often, teaching and learning aren’t pretty or romantic, especially when we’re teaching ourselves that it’s OK to be vulnerable.

Vulnerability is not usually considered a positive feature of our personalities. Instead, caregivers and loved ones talk about bravery and composure. They compliment us by telling us how well we tolerated that procedure when we didn’t scream or cry despite being in pain and feeling afraid, or they tell us how amazing it is that we still get up and go to work and live life every day when we feel so ill.

We introduce our children to the same sentiment when we reward them for not crying at a flu shot appointment. I’ve absolutely done all of these things. And believe me, all of those compliments do mean the world to us, because you are showing us care. But what we also want to consider is that the raw moments when we’re in pain, when we’re sick, when we’re vulnerable, are often more valuable than those moments in which we’re acting bravely or trying to seem “normal.”

Vulnerability shatters the facade surrounding chronic illness and allows us to simply be in the moment rather than feeling compelled to put on a mask or to spend our days acting a part. We’re warriors, but realistically, rather than in the romanticized “nothing can drag me down” sense. Some elements of composure are helpful or even necessary sometimes, but it doesn’t have to be the rule. The truth is that we hurt.

Teaching my daughter about what it means to physically deteriorate is one of those real and vulnerable moments, and we began that lesson in my hospital room when I lost my composure when I was just too sick to keep the mask on. But before I could really show her that it was OK to be that sick, I had to teach myself an extra lesson about what it means to be vulnerable and afraid. That’s a lesson I’m still working on.

What I try to remember in my better moments, to be honest, is that vulnerability teaches us our real limits rather than encouraging us to push ourselves beyond what we can physically and emotionally manage. It shows us that reality, even hard reality, is a valuable moment of learning and experience.

The reality of life is that learning doesn’t always feel good, and vulnerability doesn’t always feel good. But learning to live with and within your vulnerability does eventually make you stronger, and much more centered in your experiences. Vulnerability does not equal weakness. It equals honesty, reality and acceptance, and those are amazing things.

Getty Image by Kwangmoozza 

Originally published: December 6, 2018
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