Ehlers-Danlos, POTS, MCAS, and many other disorders are considered invisible illnesses. They are disease processes that are not always apparent to the naked eye. Those suffering from from these illnesses are often told things like “But you don’t look sick”, or given recommendations of diet/supplements that are inappropriate, or are told they should silver line everything and just be grateful they don’t have X or Y.
While these are definitely frustrating aspects of an invisible illness, I’ve been grateful in a way for the option of anonymity. It’s why I wear my wig, why I got my eyebrows tattooed on, and why I wear eyeliner to hide the fact I don’t have eyelashes. I personally feel comfortable with my hair loss. But this gives me control over who I choose to talk to about my situation. It’s complicated and exhausting to discuss and educate people, especially strangers, over and over again. If I look healthy, boundaries are automatically established unless I choose to disclose what’s really going on. It’s the tiny bit of control I get in this process.
The diagnoses of craniocervical instability has me nervous. The diagnosis itself is obviously a significant one. But at this stage, the thing I’m most dreading is losing that anonymity. I hear all the time of those needing cervical collars or other assistive equipment getting asked completely inappropriate questions from strangers in public places. My threshold for providing education and grace waxes and wanes. If a cervical collar is necessary, I’m not sure how I’ll handle losing those boundaries that have been provided by my process having the option of being invisible up to this point. Maybe this resonates with you. How do you cope with this?
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