Why My Boss’s Text About My Chronic Illness Is Such a Big Deal


It was a random day and time that I received the text. It was a link to the website “But You Don’t Look Sick” by Christine Miserandino. Specifically, it was to the page describing the Spoon Theory, which describes what it is like to live with a chronic illness, especially an “invisible” one.

In a nutshell, Christine (who has lupus) needs a way to help her friend understand what it is like to get through each day while dealing with the ins and outs of lupus. To help visualize and fully understand this, Christine uses spoons as a symbolization of the energy and effort she has to exert for even the most mundane of tasks that most healthy, able-bodied people take for granted.

To sum up, it has become a great reference for those of us with an invisible chronic illness to resort to when trying to explain day-to-day life to those who want to understand how we get through each day dealing with symptoms of our conditions.

 

The text I received that morning was from my direct manager at my job (who over time has become not only one of the most supportive friends, but also an amazing advocate for me both inside and outside the workplace).

The text was a link to the Spoon Theory, and it simply stated, “This made me think of you.” Of course, after years of being a part of the club I never wanted to join (club sick chick), I had heard of and read the Spoon Theory many times. But then it struck me. Had my boss really gone out of her way to try to understand my situation? Or even if she happened to stumble upon it, had she really read the whole thing, thought about it and then thought of me and how it applied to my life and my situation in and out of work?

While it may not seem like a big deal to most, to many of us who live with invisible illnesses, finding even one person who just “gets it” is no small achievement. Generally, the only people that “get it” are the people who also have it, as in also suffer from a chronic illness and have first-hand experience with life with a chronic and/or invisible illness.

To have the blessing of having someone in your life who goes out of their way to try to understand your situation (and even more impressively­, succeeds!) at doing so. Well, that is just one of the many blessing that has come along with having been unwittingly enrolled in this “club” that no one really wants to be a part of. And for that, I am truly grateful.

We want to hear your story. Become a Mighty contributor here.

JOIN THE CONVERSATION

Related to Dysautonomia

Why, No Matter What, I'm Not My Chronic Illness' Victim

Dear Dysautonomia, Some of my friends have pet names for you. But I’ve never wanted to do that. Calling you something cute might give you the idea that I’d like us to be friends. I wouldn’t. I’d like us to be strangers. I’ve had weaknesses in an area of my nervous system since I was [...]

To Each Illness I've Had to Fight, This Is What You've Taught Me

Dear Illnesses, Enthesitis– You are my oldest constant companion. For years no doctor could find you and yet I was well aware of your presence. At age 10 you started to attack me, stripping me of my active lifestyle. But, for all you took away from me you have given me just as much if [...]

Why the ‘R’ Word Is Not ‘Just a Word’

Every year, I try to create a post highlighting why I feel it’s important to support and practice the “Spread The Word To End The Word” movement. In an attempt to sum up just how I feel, I’m going to redeliver last year’s post with a few changes. We live in a society where having [...]

To the Mom Who Asked Why a Down Syndrome Diagnosis Is a Great Thing

I read a question today another mom posted. She recently gave birth to a child with Down syndrome. She said she’s constantly told her life will change forever and how great it’s going to be from now on. She wonders why. She holds so much fear of the unknown and is genuinely interested in why it’s so great [...]