Behind The Spoonie Society

20 Things People Living with Chronic Illness Want Others to Understand

20 Things People Living with Chronic Illness Want Others to Understand

Living with a chronic illness is a daily challenge that can impact every aspect of a person's life. Unfortunately, many individuals without chronic illnesses struggle to fully understand the experiences and needs of those who do. In this blog post, we aim to bridge that gap by sharing 20 insights and perspectives from people living with chronic illness. By gaining a better understanding of these challenges, we can foster a more empathetic and supportive environment for those living with chronic illness.

  1. Our Illness is Real:
    Chronic illnesses are real medical conditions that often produce invisible symptoms. Just because we may not appear sick on the outside doesn't mean we aren't dealing with significant pain or fatigue.

  2. Our Pain Fluctuates:
    Our pain levels can vary from day to day, or even within the same day. Some days we may be more functional, while others we may need to rest and prioritize self-care.

  3. We Didn't Choose This:
    Nobody chooses to live with a chronic illness. It's important to recognize that we did not cause our condition and that it is not a result of personal choices.

  4. Our Illness Can be Isolating:
    Chronic illness can be isolating due to physical limitations, social stigma, and the impact it has on our ability to participate in normal activities. Staying connected and understanding our limits are essential in maintaining relationships.

  5. We Need Rest, But We Also Crave Normalcy:
    Rest and self-care are crucial for managing our conditions, but we also crave a sense of normalcy and engagement in life. Finding a balance between rest and activities is a constant challenge.

  6. Our Abilities May Fluctuate:
    Our abilities can change from day to day. It's important to understand our limitations and not assume that a good day means we are completely healed or that a bad day means we are faking our condition.

  7. We May Have "Invisible" Disabilities:
    Not all disabilities are visible. Conditions like chronic pain, autoimmune diseases, and mental health disorders can impact us internally, even though they may not be visible to others.

  8. Our Energy is Limited:
    Chronic illness often depletes our energy reserves more quickly. Tasks that may seem simple to others can be physically and mentally exhausting for us.

  9. We Value Understanding and Empathy:
    One of the most significant gifts you can offer is understanding and empathy. Taking the time to listen, learn, and support us without judgment can make a world of difference.

  10. It's Not All in Our Heads:
    Our symptoms are not a result of imaginary or exaggerated pain. It's hurtful and dismissive to suggest that our condition is purely psychological.

  11. We May Experience Brain Fog:
    "Brain fog" is a real symptom of chronic illness that can result in difficulty concentrating, memory issues, and mental fatigue. Patience and understanding are appreciated when we struggle with cognitive tasks.

  12. We're Not Lazy:
    Our inability to perform certain tasks or meet certain expectations is not due to laziness. It's a consequence of the limitations imposed by our condition.

  13. Unsolicited Health Advice Can be Overwhelming:
    While we appreciate your concern, constantly offering unsolicited health advice can be overwhelming and even harmful. Please respect our boundaries and understand that we are actively managing our health.

  14. Accommodations are Vital:
    Sometimes, we may need accommodations to participate fully. This could include physical modifications, flexible schedules, or understanding if we need to step away from social situations.

  15. Emotional Support Means the World:
    Chronic illness can take a toll on our mental health. Offering emotional support, space to vent, and a shoulder to lean on can make a significant impact on our well-being.

  16. We're Not Faking It:
    Living with chronic illness involves a constant battle against skepticism and doubt. Trust us when we say we are doing our best to manage our condition.

  17. Our Dreams and Goals Remain:
    Having a chronic illness doesn't mean we stop dreaming or setting goals. Support our aspirations and help us find alternative paths to achieve them.

  18. Self-Care is Mandatory:
    Understand that self-care is not a luxury but a necessity. Encourage self-care practices and respect our need for rest and rejuvenation.

  19. Good Days and Bad Days Coexist:
    Celebrate with us on our good days, but also understand that bad days can still occur even if we seemed fine before. Our condition is unpredictable.

  20. We Are More than Our Illness:
    Lastly, remember that we are multi-dimensional individuals with interests, passions, and talents beyond our chronic illness. See us for who we are outside of our condition.


By acknowledging and understanding the experiences of those living with chronic illness, we can cultivate an environment of empathy and support. Let's strive to educate ourselves, listen without judgment, and offer the compassion that individuals with chronic illnesses genuinely deserve. Together, we can build a more inclusive and understanding society.

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