Balancing My Labels as a Person With Chronic Illness

Sick, sweet, quiet, shy, straight, girly: labels stuck onto my back by the world. Whether I agree with them or not, those labels are fused with my public identity. Some labels are vitally important, particularly within the medical universe. All of my diagnoses are simply labels for physical challenges…challenges that existed long before they had official names in my medical records. Still, I hope for another label. Having a more specific mitochondrial disease classification could help me get into more studies and future drug trials. In that sense, a label is a positive, clarifying tool. However, living with more than the average number of labels has made me wary of them. How do I strike the balance between evolving person and diligent patient?


My instinct is to remain open to change and growth. I avoid pokey boxes and sticky nametags. As a child, I preferred to be friendly with everybody rather than throwing myself into one little social group. I didn’t want to be defined or cut off from potential connections because of a tight, exclusive little clique. As an adult, that really hasn’t changed. Rather than letting everyone around me shape my identity, I try to break the boxes down. Labels and identity go to together like peanut butter and jelly. Turns out, that’s one combo that causes discomfort for me (literally).

I accept medical labels as necessary parts of my life. Mito, EDS, POTS, gastroparesis, PCOS, and Hashimoto’s didn’t just appear on my chart overnight. It took years to reach many of those conclusions, and they lend my story legitimacy in exam rooms. “Spoonie,” a label describing people with chronic illnesses, is an accurate label. While I’d rather not have any reasons to identify with that word, I actually have lots of them. Since it’s impossible to shake off those physical reasons, I’ve chosen to write and speak from my spoonie perspective.

While I see the value and power in possessing my medical labels, I’m rapidly approaching my personal label limit. Outside of the super-wordy medical universe, I enjoy being less defined and fluid. OK, I’m not going to knock out the next person to slap me with a label! Part of reclaiming my identity is allowing some labels to peacefully float away. As I live my life, various choices and actions will do the work for me. Wishing every label out of an acquaintance’s mind won’t wash them away, so the next positive step is to focus on my internal labels.

Inside, I’m the label-maker! How I choose to label my sexuality, faith, style and personality is up to me. If I’m comfortable with being quite fluid throughout many areas of my life, then that’s my business. It’s not my solemn duty to share my internal labels with everyone I meet, and it’s not anyone else’s role to attach new labels. As a person – not just a breezy-gowned patient – my identity is a vibrant tapestry of labels and experiences. I’ve benefited from some labels and felt the weight of others. It’s not realistic for me to remove every label from my being, but it’s possible to harness their power and claim my identity.

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