The Way We Speak About Our Illness Matters
When people ask me about ankylosing spondylitis, I get uncomfortable. First, I don't want to "seem whiny." Second, I feel a little overdramatic talking about my pain and discomfort to people who don't get it. If they can't see a wound or a disability, I get the sense that they just think I'm being overblown.
And if you are a woman or femme-presenting human, you've probably noticed by now that almost anything we say or do is reduced and described as crazy or overemotional. The gender issue, of course, complicates matters. How can I convince people I'm not "weak" or "being a girl" about it (the worst, am I right?) or melodramatic? I don't want people to think I'm "just" the sick girl, that I have nothing else to offer (which isn't true, of course).
I recognize that a lot of this paranoia is on me — but that I carry these feelings because of lived experience. I've had a doctor — a man — tell me, "Luckily, men get AS worse, so it shouldn't be too bad for you" after I poured my heart out to him about my pain.
Can you imagine (I'm sure you can) how small and silly I felt?
I've found myself downplaying my condition
So over the years, I have found myself saying to people, "It's not a big deal, I'm not dying or anything" far more than I'd like to admit. Every time I utter those words a part of me dies inside. Because it's self-erasure. It's accommodating to others, rather than self-advocacy. And it's a lie.
It is a big deal. It's a big deal that I'll always spend more money on my health. That I can't sleep at night. That I either risk cancer from rampant inflammation due to the disease or I risk cancer from the medications that treat it. That I need to modify and re-assess and plan my life around a disease that puts me on my ass. That I've needed to switch careers. That I need to figure out how to get injectable medications if I travel abroad. That my spine is slowly fusing and that one day I may lose my mobility. That I'm constantly fighting off fatigue, like a shadow that follows me room to room — and throughout my life.
And it's a big deal that my mental health is affected by my physical health.
My experience is valid, and it's a big deal
I'm a woman. I can't know a man's experience. I can't know anyone's experience but my own. And my experience is tough — so, no, it's definitely a big deal.
I have been trying to take a pause and really consider my language when I speak to people about my AS. What do I want to say? What do I not have the energy to share? What can I say about disease experience that reflects my real feelings? How can I silence the voice that tells me "you're being whiny" and embrace the voice that says "you are allowed to speak your truth?"
Have you ever felt the need to downplay your experience to make others comfortable? Have you ever felt a sense of embarrassment from being honest? I'd love to hear your thoughts.
Does reading AxSpA patient stories help you in your journey?