Being vulnerable is necessary when I’m explaining my symptoms

I don’t know about you, but I find it hard to explain my symptoms to others. Fatigue is easy to confuse with laziness. Bruises on my body can make people wonder. Brain fog is hard to differentiate from forgetting things because I don’t care.

As I battle aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), the symptoms that phase in and out can be tough to explain. When I do, I feel like I’m making excuses for the way I feel. A recent column of mine, “How to feel less guilt when PNH leads you to cancel or say no,” covers that subject.

Sharing my chronic illness journey and explaining my symptoms can make me vulnerable in a way I never expected. As I speak with others, I feel vulnerable when I imagine the long days of lying on the couch and the moments I’ve spent in my room, crying in frustration when finding another bruise. These episodes of “weakness” are the ones that seem easy to keep hidden.

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But when I’m explaining my symptoms, these hidden moments are what I relate, and I feel shame. I find myself mumbling or talking fast about how I had nosebleeds in front of others or how I hid my brain fog at work as best I could so people wouldn’t think I couldn’t do my job accurately. The shame I feel afterward keeps me from wanting to share such moments again.

When someone asks me why I’m always tired, I have two choices. I can either brush it off and reply with a short answer, or I can go into depth. I don’t want to do the latter because that involves opening up and letting someone in; doing so would demand vulnerability.

Breaking down ‘vulnerability’

Thinking of the word “vulnerability” quickly shifts my thinking to Brené Brown, the mother of explaining it in depth. “The definition of vulnerability is uncertainty, risk, and emotional exposure,” she has said. “But vulnerability is not weakness; it’s our most accurate measure of courage.”

When we explain our symptoms, it’d be beautiful to embrace the vulnerability surrounding them. Instead, we’re much more comfortable seeing them as a weakness. What if, as Brown says, we sat in the discomfort and leaned into its strength?

We should all lean into the vulnerability it takes to share our lives with others. Even if they don’t fully understand, we have a small win to celebrate: the courage we’ve shown to be open with others.

I still struggle with this practice today. I wish there were a magic solution to knowing how to explain my symptoms and not feel the awkward, tense body reactions from being vulnerable. Unfortunately, I don’t have an answer for it. But what I can do is practice sharing, over and over again, to expand my comfort zone.

Become comfortable with being uncomfortable: I’ve navigated through life with this principle and applied it in many different scenarios. As I succumb to the discomfort, I hope it becomes more comfortable and easier to sit with over time — which could lead to feeling less shame. As Brown tells us, shame is the painful feeling of being unworthy.

Remember, you are worthy, and it’s worth sharing your story with others. I’m not saying to share your message with everyone, but sharing it with the most important people in your life builds courage and worthiness.

Note: PNH News 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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