Youth Takeover: What I wish other people knew about living with a chronic illness

Jenna is a long-time member of Upopolis and a regular contributor to our blog post series. We appreciate and value everything she teaches us about being a young adult living with a chronic illness.

Today, she shares 5 things she wish others knew about living with a chronic illness. This is so insightful to those of us who don’t have a medical illness, as well as incredibly validating for those who do. Check out what she has to say:

1. The invisibility of an illness does not diminish its existence or impact. Invisible illnesses, often overlooked due to their lack of visible symptoms, can be just as debilitating as those with outward signs. Individuals including myself facing these conditions may struggle with daily challenges that go unnoticed, emphasizing the importance of empathy and understanding. Acknowledging the presence of invisible illnesses promotes a more compassionate and supportive approach to those dealing with such health issues.

2. The visibility or recognition of an illness does not determine its validity, and this holds true for individuals often referred to as “spoonies” who contend with chronic and invisible health conditions. Whether an illness is widely understood or remains unknown, the experiences and challenges faced by those dealing with chronic health issues are valid and significant. The term “spoonie” is often used to describe people managing conditions like fibromyalgia, lupus, or chronic fatigue syndrome, emphasizing the daily allocation of limited energy “spoons.” Recognizing and respecting the validity of these experiences promotes empathy and a more inclusive understanding of diverse health struggles.

3. When chronic illness warriors find themselves needing to cancel plans, it’s not an expression of dislike or a desire for isolation. Rather, it reflects the unpredictable nature of their health challenges. It’s crucial for friends and loved ones to continue extending invitations, engaging through FaceTime, and making efforts to foster a sense of inclusion. Chronic illness warriors appreciate gestures that make them feel loved and understood, such as learning their unique love languages. In doing so, relationships can thrive despite the challenges posed by chronic health conditions, reinforcing the importance of compassion and ongoing support.

4. Experiencing occasional colds or minor illnesses may provide insight into temporary discomfort, but it doesn’t equate to a full understanding of the complex and enduring challenges that come with chronic illnesses. Chronic conditions often involve persistent symptoms, fluctuating health, and long-term impacts on daily life. It’s essential to recognize the distinction between short-term ailments and the ongoing struggles faced by those with chronic health issues. Empathy and genuine understanding can only be cultivated through acknowledging the unique and sometimes invisible aspects of chronic illness experiences.

5. Choosing not to drink alcohol, whether due to health reasons or personal preferences, doesn’t diminish one’s coolness or ability to enjoy social gatherings. The decision to abstain from alcohol is a valid choice that deserves respect and understanding. Many still find joy in partying and dancing without the need for alcoholic beverages, embracing alternatives like delicious mocktails. Creating an inclusive environment where individuals feel validated in their sobriety fosters a more considerate and accepting social atmosphere, acknowledging the diversity of preferences and lifestyles.

Thank you to Jenna, and all our Upopolis members, who teach us something new every day!

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