Frailty (Part 2: Illness and Identity)

Sometimes it’s hard to look back and pinpoint exactly when things started to fall apart. My guess is, it was a slow progression… but I remember sitting on the bed talking to my husband and crying because I knew something was wrong with my health. It was a gut instinct.

Things started in earnest in 2011. Before my feet stopped functioning, I had a full-body systemic allergic reaction that left me with hives and urticaria from head to toe. Several rounds of steroids solved it, but I was left with no answer as to why it had happened. Then my feet go so painful it was difficult to walk. Then I got migraines every day. Every. Single. Day. And chronic pain set in. I felt like I had arthritis… everywhere.

I saw oodles (literally oodles) of specialists, had a gazillion tests run, and continued to get worse. No one could find anything wrong. Many people offered prescriptions I refused to take. I stopped working full time. I put the idea of going back to school on hold. This was 2012. And I would sit on the bed and cry because I knew in my heart I was sick and no one could tell me why.

Turns out it was Lyme. Or at least, that’s the best guess because the tests they run in the Midwest consistently turn up negative for me. But I am a textbook case - including a bull’s eye rash from 2007 that no one took seriously (we were told it was tick fever and that my flu-like symptoms would pass). 

There have been a lot of weird health issues between 2012 and now. It seems like something new pops up every year - some new kind of bodily hiccup that requires a change in routine or medication or diet or treatment. It’s been a lesson in flexibility. Adaptation. Patience. And a lot of letting go.

Because the hardest part has actually not been the day-to-day experience of being ill. That comes and goes… and I liken it to being in a dark room blindfolded while things fly at your body… or riding a roller coaster with no sight so that you don’t know what’s coming next. It’s not constant. It ebbs and flows… and each change becomes something you eventually recognize and normalize. I seem to be good at that. What has not gotten easy is making peace with the new identity these changes have wrought.

My concept of self has shifted immensely over the past 6 years. I am no longer a dancer. No longer someone who can remember anything - who never has to write things down. I am no longer 100% sure I will be able to figure out anything thrown at me quickly and flawlessly. Nor that I will be able to handle highly stressful situations - or even situations that contain lots of people and unpredictable variables - without my system going haywire.

I move through life more carefully and more cautiously. This is not necessarily bad. But it’s new and not yet something I consider it naturally be synonymous with my concept of who I am. I still push very hard. My will is intact and it’s enabled me to remain positive (mostly), to see this as a learning experience, and to stay present despite the sometimes scary or uncomfortable surprises that surface.

But I am different. The way I know myself is different. And it’s still hard to fully accept that the “old me” is likely never coming back - that even were I to regain a sense of wellness, I still won’t be able to go back to where I was before all this started. That’s a weird, hard, stupid thing to contend with - but one that every single person with chronic illness must wrestle.

May you value your abilities and blessings in the present moment. May you find acceptance along the unexpected pathways life springs at you.