Chronic Illness Burnout: Taking a Step Back
Last updated: May 2022
I've been part of the Health Union community for two years! And I'm so proud of that fact.
I pride myself on connecting with so many of you here and the ankylosing spondylitis community. The ankylosing spondylitis and axial spondylarthritis communities bring me a sense of hope while continuously providing me with information, support, news, validation, and new, deeper ways of understanding my condition.
Grateful for community
Having a community to turn to when you have such an isolating disease is beyond important, and I’m so grateful for it.
I am a writer and a moderator, which means I speak with many of you and I am always in an ongoing conversation with myself, you all, and this disease. It can be a lot sometimes. (As an aside, I'm also a health journalist, so I am constantly steeped in words and ideas and research about the body).
I’ve written about drawing boundaries as a patient advocate before. A while ago I wrote,
“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).”
I still heavily relate. For a few months, from the mid-end of last year until this year, I took a step back. It wasn’t that I was overburdened with the pain of this disease, or that I was upset or bored with the conversation about AS.
It’s that sometimes I just need to live my life during the good days
When I’m not in a flare-up, I really try to enjoy it. When I’m not in pain or exhausted or brain foggy, I try to live my life to the fullest, taking advantage of those beautiful moments. They feel so free and whole and good, and they remind me of the days before this disease.
Sometimes I just go quiet. I'm human. Those are usually the times when I need to rest or recalibrate, to walk away from the heavy conversation, or to just enjoy the freedom and splendor of life when I feel good.
Finding a balance
I think it’s important to establish a balance when we are so tied to our chronic illness communities, however that may look for each of us. Maybe it’s not posting to Instagram so much. Maybe it’s taking a break from writing for a site like this. Maybe it's skipping checking the support group online.
I know I'm not alone. I’ve heard some chronically ill people and patient advocates say that they do tend to feel burnout at a certain point. I think that’s completely fair! I also don’t think burnout is the same thing as not caring or giving up on your community.
Burnout is normal and it can happen to anyone in any industry or work or experience. Remember, embrace the good times. Live your life. Indulge in the positive when you can. Connect when you want to. Embrace community when it feels right. And take a step back whenever you need. We will be here waiting for you.
Have you ever had to take a leave of absence from work due to your symptoms?
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