Selena at Oh My Aches and Pains is hosting the next edition of Patients For A Moment, the patient blog carnival.
In the spirit of Valentine’s Day and all things related to love, she posed the following question:
Love? Hate? What are the four letter words you use to describe your life with chronic illness?
I’ve been thinking a lot about those two words, love and hate, and how they figure into my perspective. After careful consideration, I don’t think either of them are the four-letter words I’d choose to describe my life with chronic illness.
Certainly, they are a part of my life. I’m not trying to pretend otherwise.
For instance, I don’t like when I have to miss things or cancel much-anticipated plans or let people down when I am sick. I dislike how overwhelmed I get when things are acute and work and frustration and guilt pile up, and I cannot take anything for granted, including the small things healthy people wouldn’t have to worry about. I don’t like that my first intact childhood memory is from a surgery when I was a toddler, and that I can mark many holidays depending on which hospital I was in and for how long.
But even in the moments when all the varied losses seem like more, they are usually smaller grievances. Hate is too strong a word. Or perhaps there is enough resignation (or experience?) built in after three decades that it does not need to escalate to that point.
I love that despite illness I am doing many things I am passionate about and have created a life that is (too) full. I am fortunate to have found somewhat of a balance between what I need to do for my body and what I need to do for my mind.
I love that after 29 years of surgeries, infections, and setbacks I am in a relatively good groove with the best doctors available to manage my definitive diagnoses. I love that after 23 years of near-constant high-dose steroid therapy I have a break, and the highs and lows are much smoother.
I love that I am married to a person who sees me as a whole person and not a constellation of symptoms, whose compassion and selflessness is intuitive and instinctive.
I love that there are people who know me as a relative or friend, a writer or editor, a professor or consultant, but don’t automatically think of me as “sick.”
And I appreciate that when things are tough and crises occur, they do think of me as sick and understand my situation enough to know homeostasis will return at some point.
So if I had to pick other four-letter words to describe life with illness, mine would “give” and “take.” Illness takes away little pieces of the identity I’ve worked hard to build and I push back and reclaim them. Illness makes demands on me and those in my life and we acquiesce when it is prudent to, and move forward despite those demands we can.
I am no Pollyanna and I won’t pretend that I wouldn’t love to be healthy. But, I love that I do not have to hate my illnesses…that would be giving them too much.