Developing Boundaries In The AS Community

This is going to be hard to write — and hard to admit to myself — but I've had to develop real boundaries when it comes to engagement in the AS community. As an advocate, writer, and everyday patient, I can only help others or help myself when I have the space I need to do so. Space gives me perspective. It gives me a chance to reflect. It gives me the option to check in with myself without all of the noise.

Community is key

First, I want to say that community is key. We know from studies like this one that social support helps us to cope with our diseases and even reduce depression. And we know that loneliness can contribute to poor health (and that poor health, unfortunately, can also contribute to loneliness), according to another study. In short, I am a big believer in the healing power of social support, social media connection, sharing our stories, and engaging with other patients and advocates. Hey, I do it every day.

But sometimes it can be too much

But sometimes I just need a break. Sometimes it can all get to be too much. Sometimes I need to step away from the conversation, from the pain, from the stories, and simply focus on being present and alive and in my body. Sometimes I don't want my life to be only about AS, so I actively try to enrich it and to not let myself fall into a state of constantly ruminating on it (which took work, especially as a young person navigating an expensive disease that upended my job and forced me to change my lifestyle).

When I was first diagnosed, I would spend hours in my cubicle at work, totally distracted, scrolling through AS support group posts or searching the hashtags #spinalfusion or #chronicpain. It got to the point that I'd go to the bathroom to cry. I was overwhelmed and scared for everyone and myself and feeling empathy overload.

I knew no separation between others' experiences and my own. It all collapsed into one. I wanted to help everyone but I simply could not. Some selfish part of me also didn't want to end up enduring what others were going through, and I think that's only natural.

Compassion fatigue

And then there's the issue of compassion fatigue. Sometimes I don't know what to say to the person whose treatment just won't work or who can't get out of bed. Sometimes I feel I've said it all and I've felt it all.

Sometimes I feel I'm fed up with the disease and simply have nothing else to offer — no kind words, no suggestions, no patience. Sometimes I can't tell the difference between hope and suffering, and it all becomes a blur.

Sometimes all I can muster is a little heart emoji, posted beneath an eloquent and devastating social media caption. That stupid little heart makes me feel extremely empty — because I want to say so much more! — but at times, that's all I can give.  I don't want to lean into chronic, harmful positivity, but I don't want to drag someone else down either.

Negativity overload

Sometimes I feel dragged down by others, like I'm being tapped for any pity left in my body. Sometimes people say things like, "we are doomed" or "good luck keeping a relationship with this disease" or "I'll never be happy again." This makes me angry, frustrated, and defensive. Sometimes people confuse activism with preaching fake "AS cures" to vulnerable people, a surefire way to get my blood boiling.

And so, during those times, it's important for me to step away. In order to be engaged, to not fall into a pit of worry, to lean into compassion and not resentment, to be authentic in my support and presentness, and to be kind to myself, there are times I just have to get off the Internet. I don't want to fill my time or space with anger or frustration or resentment.

Being a patient is tough and tiring enough.

Being a writer requires periods of rest and reset so that you can come to the page with something helpful.

Being an advocate requires self-awareness, compassion, and the ability to listen. After all, we are only human.

All of this is natural, normal, and OK. Have you ever felt you needed to establish boundaries as an AS patient or advocate?

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