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The Bleeding Hearts of the Chronically Ill: Balancing Advocacy and Basic Needs

Those living with chronic illness often deeply wish to raise awareness, advocate for health justice, volunteer to help others, or otherwise give back to the community. However, in our zeal to transform systems and uplift others’ suffering, we can inadvertently neglect our own basic needs.

Many chronically ill patients come from lower-income backgrounds or currently face financial insecurity due to exorbitant medical costs, time off, and lack of consistent full-time work. Maybe we are starting over, going back to school, or changing locations or jobs to find a healthier environment both physically and emotionally. Another layer is many carry subconscious limiting beliefs and poverty consciousness from our upbringings. Additionally, living with health challenges day after day can distort our perception of what we are realistically capable of handling. Our bleeding hearts desperately want to help, but our depleted bodies and minds have limits.

Navigating these dynamics requires brutal self-honesty and boundaries. We must balance our advocacy with prioritizing fundamentals like getting enough food, paying bills, and resting when needed. Yet because society glorifies self-sacrifice and grind culture, putting ourselves first can feel selfish or lazy. Additionally many chronic illness communities are desperate for additional holistic support, many feel like if we don’t do it, who will? The opposite can look like creating a power facade in the advocacy world to hide the deeper layers of pain, unintegrated traumas, and the authentic reality of our lives. Some use the bolstering to stoke their egos to simply, “feel better” about ourselves. But this false narrative is just too costly for a patient living with chronic illness. The honest but more vulnerable way to find a sustainable balance is to have integrity by being brutally honest. With ourselves, others, and especially our community. What good is it to pretend we are living the high life, and displaying all our gratitude if truly we hide our pain. This only prevents others from being more transparent of the challenges many if not most patients face. Are we ready to have honest discourse that we can be grateful yet be struggling? Are we ready to be honest and develop the authenticity it requires to embrace a holistic vantage point of well, life? This is not exclusive to patients, it truly is the nature of our human condition in this age of doing more and juggling more and more as our culture becomes sicker and more stressed than ever before.

The truth is the chronically ill community must often reframe our own stories again and again first before diving into activism or volunteerism. When we overlook or occult financial struggles, physical exhaustion, we loop in patterns of fragmentation and further hardshop, in the name of helping others and a cause. Are we unconsciously trying to prove our worth by mimicking able-bodied advocates or people who are not living day to day with managing a chronic illness?

Rather than harshly judging these tendencies, have compassion for the psychological underpinnings. Then set clear limits around how much time and emotional bandwidth goes toward external causes versus self-care. Outsource tasks when possible and stick to capacities that are sustainable. Take a solid assessment of where you are at. From there, write our your needs and desires. Step by step takes measures to balance your own life first. One of the most rewarding ventures is to be of service to to others. But when our empathy is rooted in people pleasing patients must learn the psychology and learn it's okay to care for the self first.

Advocacy matters, but so does honoring a depleted body and nervous system. For the chronically ill, advocating for self care while nurturing wellbeing is a radical act in an overactive ableist world. Balance is key for avoiding burnout and continuing the long-haul fight for not only justice but for our lives as well. We can uplift others more powerfully when our basic needs are first met. One of my favorite quotes I refer to often when teaching yoga is, "when you show up in your authenticity and vulnerability, you offer permission for others to do the same". It's time to be completely honest and transparent. It's what this world might need most.

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