Invisible.
It’s a word that comes up frequently in my memoir.
I often felt invisible, as a child, very sick in the hospital.
At 11 years old, I ended up with an ileostomy - I was glad that it was hidden under my clothes; invisible.
Twenty-five years later, I was diagnosed with MS, my second “invisible illness.”
In 2018, I learned that I have Primary Sclerosing Cholangitis (PSC), a disease of the liver. It was so invisible that it was a secondary diagnosis; I had no symptoms.
Here’s the good things about invisible illnesses; no one knows you have them unless you tell them. You can keep your health private, if you want.
I mostly chose that route with regards to my ileostomy. What’s unfortunate is I did so out of fear and shame. Looking back, I understand, kids just want to be like their peers, but being secretive was an emotional burden and isolating.
As an adult with some experience with illness, I chose to be open about my MS. It was such a relief to have people know I was going through something. Ironically, looking “the same” can now be the burden. “Looking great” is nice but often no reflection of how I’m feeling, physically and sometimes, emotionally. Generally, people don’t know how much I have to manage my strength and energy. And, most of time, I don’t feel like educating people on the ups and downs of the disease.
I no longer feel invisible, and with my book about to be published I can’t give in to the desire to hide under a rock. Making my vulnerabilities visible is a risk, but I’ve chosen the perspective to hope that the rewards will outweigh them.