Why it’s hard to be chronically ill And spontaneous: Or the consequences of not planning #myspoons

Today on the Days of our Spoons…

Coping with inadequate spoons.

3093594 / Pixabay

If you’ve read the Spoon Theory, you know one of the important ways it talks about having an invisible illness is in communicating how we deal with having limited energy.

Pre-disclosure I’ve lost a lot of friends and career opportunities because I was too proud to say “I’m struggling with a disability.”

In fact in years past, due to my own latent ableism, I thought of myself as someone who wasn’t disabled.

In my mind I thought the space between having a short term injury and a visible disability that included a wheelchair or obvious tell was to be overcome by hard work.

Understanding the lives of disabled people helped me live happier.

Partly from American culture and partly from my immigrant and African background, I somehow got it into my head that people who occupied that space and didn’t “tough it out” were lazy or entitled, not physically or emotionally unable.

The turning point for me was in talking to people with varying levels of disability, including those who are chronically ill or invisibly disabled. It was in reading other people’s stories and talking to other people that I eventually came to realize that I could legitimately call myself disabled and not be ashamed or afraid of what that meant.

This also led me to write about my experiences with Chronic Lymphocytic Leukemia, a chronic form of Leukemia that is treated as Lymphoma. Throughout the entire experience, I still only know one other spoonie who has had experiences with chronic cancer.

I also began to see that having a disability was not the end of the world. It was just a new challenge that I’d learn to live with, more or less happily as before.

The story below took place on June 28.

A lot of times I only have the energy to tweetstorm about my issues of the day. Every couple of days I’ll come and gather them here.

I hope they help either

  1. explain what it’s like to live with a chronic illness, for newly diagnosed people, as well as the people who love us, or
  2. Provide useful tips on how to cope.

I’ll hashtag future tweet series and posts about this with #myspoons if you’d like to follow on Twitter or elsewhere in social.

Again, if you’d like to have your story shared or your tweets included in my posts about a day in the life of a spoonie, use the hashtag #myspoons or connect with me on my @Tinu Twitter handle, until I have the energy to create a submit form. 🙂 

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