And I know there’s privilege in this take. I am privileged to have friends and to have the ability to flare myself up. It’s not always a choice for all of us. Chronic illness and chronic pain is not a monolith. It’s not a one size fits all. Not every take is going to fit every person. And that’s ok. Bean soup. ❤️🩹
Living with chronic illness and chronic pain often means navigating a complex and deeply personal journey. It’s important to recognize that these conditions are not uniform experiences—what works or feels right for one person may not be the same for another. For many, the idea of 'flaring up'—a temporary worsening of symptoms—is a difficult but sometimes consciously accepted aspect of seeking joy or connection. Engaging in social activities or pursuing passions can occasionally lead to overexertion and subsequent flare-ups, but for some, the emotional and psychological benefits outweigh the temporary physical discomfort. This mindset reflects a desire to reclaim moments of happiness and normalcy amidst ongoing challenges. Rather than being a choice available to all, it is a privilege tied to personal circumstances, support systems, and individual health limitations. Understanding this balance is crucial in fostering empathy for those living with chronic conditions. Chronic illness is not a 'one size fits all' experience; it encompasses a spectrum of symptoms, severity levels, and coping strategies. Some may prioritize managing symptoms to avoid flares, while others may accept short-term setbacks to achieve meaningful social or personal experiences. Importantly, communities and discussions around chronic illness are beginning to acknowledge this diversity. Sharing authentic stories about joy, pain, privilege, and limitations helps dismantle misconceptions and encourages supportive environments. It’s also vital to recognize self-care as a dynamic practice—sometimes pushing boundaries to experience joy and other times prioritizing rest and healing. In summary, living with chronic illness involves navigating complex decisions about balancing physical health and emotional well-being. Recognizing the privilege in having certain choices, while respecting the varied experiences of others, can deepen understanding and compassion within ourselves and among our communities.









































Yes. I do this on vacation trips. I try to plan rest days one day before travel and one day once we arrive. Although it’s not always possible. I will push through a lot to get to experience everything I want. I took my 14&15 year old boys on a cruise to the Bahamas, which worked out great. I could be in bed ordering room service for a late night dinner and be asleep by 9pm. And I told them they could go explore the ship and that I didn’t have a curfew for them but the night crew comes out at 2am to start cleaning so most people take that sign to go to bed. I felt really safe with that on days the boat was cruising. They had their own room next door to mine so they could come and go without bothering me.