Accepting Ignorance to Find Peace
A quote by Matt Kahn says, “Despite how open, peaceful, and loving you attempt to be, people can only meet you as deeply as they've met themselves.”
In my three years of living with AS, I have encountered many people who are ignorant to my disability. I always make an effort to explain my illness to the people I become close to. I teach them to pronounce ankylosing spondylitis, show them how it affects my day-to-day life, and make them aware of the barriers I face. But even after this, some people show me ignorance and disrespect.
A friend mocked me
I had one friend who I spent a lot of time with. I thought they must understand my AS because they’d seen me living in pain. I later found out that they mocked my disability behind my back — the illness that consumes my life was a joke to them. I had another friend who gave me unsolicited medical advice, after I had educated them extensively and explained why unsolicited advice is disrespectful. These experiences have taught me that no matter how hard I try to explain AS to the people in my life, it is their choice to listen.
Ignorance is not a reflection on me
The idea in Matt Kahn’s quote — the idea that no matter how “open, peaceful, and loving” you are, you will never be understood by certain people — has helped me find peace in the ignorance surrounding my disability. If someone doesn’t know themselves deeply, how can I expect them to know me deeply? Their ignorance might not be a reflection of my failed efforts to explain AS, but rather a reflection of their ability to think deeply and empathize. No matter how vulnerable or patient I am while I educate them, they may not hold the capacity to learn.
Let me be clear: I don’t expect anyone to understand AS right away. I bring it up when I can, explain its complexities over and over, and share resources (including my own articles), giving people the chance to learn over time. I also don’t expect anyone to say the “right” thing all the time — I am happy to help people who are learning (and genuinely trying) to understand AS. I only decide that someone is ignorant after they have missed several opportunities to show me differently.
If you can't understand AS, you can't understand me
You may wonder: why is this such a big deal? Why can’t I be friends with people who don't grasp AS on a deep level? Well, the reality is that if you cannot understand AS, you cannot understand me. You cannot “get to know” the academic, athletic, or social parts of me without also knowing the chronically ill part of me. And therefore, because living with a chronic illness is inherently deep, my entire identity is invalidated when I interact with shallow people.
After much contemplation, I have accepted the ignorance of others. Yes, it hurts when people are ignorant about AS, but if they do not know themselves or the world deeply, they will never know me deeply — so I have accepted what I cannot change. It feels like a burden has been lifted off of me. Now, as soon as I recognize someone's ignorance, I will distance myself from them, rather than draining myself trying to make them understand. I will surround myself with mature, empathic people, and in their efforts to understand, I will find peace. To those who remain ignorant, I will not ask for anything more — my scarce energy will be spent on better things.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?