Got Spoons?

Since I started this blog in May I have made so many friends–in addition to the friends I have made at MWOP. Today, I would like talk about one of my new friends who contacted me several months ago on FB once my real name was made public. I admittedly was leery of making friends with a stranger on FB, but she admitted to lurking at MWOP, reading my blog, and told me a lot about herself. I liked her almost immediately. She is sweet. She is funny. She is open and honest. She is many things, and her name is Colleen. This is the lady herself:

You know, she’s just a regular girl in her 20s that likes to hang out in the dryer. When I first got acquainted with Colleen, I read her FB page, and I looked at her photos. She is a beautiful woman. In alot of photos she is wearing a big smile, acting goofy, or showing off her flexibility. Then I started reading more messages from her as we got to know each other. Colleen, as it turns out, is severely affected by an autoinflammatory disorder (and an autoimmune disorder) that has led her to have many wounds, draining wounds, 30+ surgeries, and chronic pain. After learning how sick Colleen is I looked at the photo of her in the dryer and though, “Well, she sure doesn’t look sick!” She does have pictures and videos, though, that show her many wounds, and her draining wounds. It’s really something. She takes tons of pills everyday, but she also makes pill people for fun:

On some days, when I would visit Colleen’s page I would see her comments that she was having a bad day and in substantial pain or quite tired. Her many friends left encouraging comments, and many of the comments included the word “spoons.” Spoons? I really didn’t give it a second thought until Colleen changed her picture on FB to this:

GOT SPOONS? Who in the hell would have such an obsession with an eating utensil? I finally broke down and asked, “What is the deal with the spoons?” Colleen told me, and I got it.

There are many people who are chronically ill but don’t look sick at all. Those with lupus, other autoimmune disorders, MS, chronic migraines, sickle-cell anemia, depression, fibromyalgia, chronic fatigue syndrome, etc. They look just like you and me. They don’t look sick and are often told that. One woman, Christine Miserano, set out to change that mindset. Christine wrote an article called “The Spoon Theory” at the website butyoudon’tlooksick.com. (You can read the article by clicking this link:  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.  I wanted to print the article here, but the author never answered my emails asking for permission to do so.) Christine suffers from lupus, and the article tells the story of her being at a diner with her best friend. Her best friend doesn’t totally understand what it is like to be chronically ill. To teach her a lesson, Christine goes around to all of the empty tables at the diner and picks up spoons from the tables. She gives them to her friend and basically says, “I’m going to show you what my life is like. You are holding x number of spoons. These spoons represent your energy for the entire day. You have to do this and it will require one spoon.” The friends sets the spoon down. “You have to choose between doing this or that. You chose to do this, now give me 3 spoons.” The gist of the article is to point out that chronically ill folks (who don’t look sick!) are some days so affected by their illness that they have less “spoons” than they would on other days, and Christine misses the days when she didn’t have to worry about spoons at all. They have to be mindful of their bodies and what they can handle. I understood it now:  all of those comments on Colleen’s page leaving her hugs and spoons were wishing her to get well. I had RSV and pneumonia last month, and Colleen sent me messages to check on me:  “How’s your spoon count today? Are you better?”   “I hope you’re feeling better! Hugs and spoons!”

I encourage you to read the article from the link provided above. If you know someone with a chronic illness who doesn’t look sick this article is a great reminder that they ARE sick. It gives a wonderful explanation from their perspective.

And to Colleen, thank you for sharing so much of your story and sending me an invite to be your friend. Hugs and spoons  ♥

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7 thoughts on “Got Spoons?

  1. Thanks for sharing this. I’ve posted as McMentally ill on MWOP. I have bipolar disorder and PTSD and in the last 14 months went from doing well with a great job as an OT in home health who needed some minor surgery to someone who had something weird happen to her brain after surgery. I eventually had to give up my job, apply for SSDI and use food stamps to survive. After I got SSDI making ends meet is a daily struggle and I am a long way from being able to work even a little. That’s hard for people to understand, so much so that having a hysterectomy 5 weeks ago has been a huge blessing because people understand why I am so exhausted.

    When I was a therapist I had my own version of the same idea, involving being given one cup of energy and doling out tablespoons or larger amounts as we talked our way through a day. I kept it very loose though so that people who required more drama ran out at 2 pm and those who were getting it made it further into the day.

    This was a great find. Thank you.

    • You’re welcome. I’m so sorry to read about your health problems. I suffer from depression and blood work shows that I have Epstein-Barr virus as well; basically I got mono in college and my body has kept the virus. Sometimes I am quite exhausted, my joints hurt, etc. My doctor says that is the EB and that some days my body is more inflammed than others. Today I’m having an ok spoon day, and I hope you are too 🙂

      • I have a friend with EBV and that is an ugly virus. He changed a lot after it showed up because of how much his energy levels changed.

        I have the great spoon pass right now. I had a low spoon day but the hysterectomy lets me have free do nothing days. With depression you probably understand how great it is to have that um, golden ticket for not doing anything.:)

  2. Thank you for sharing the Spoon Theory with your readers[SNORT]. I hope it will touch and/or help at least one of your readers.
    Everyone else, I hope you will share the Spoon Theory with your friends and family (and blog readers). It can help others understand a bit more what it is like to be you(if you are a spoonie). If you are not a spoonie, it can help you see what it is like to be one.

  3. LOVE this. The story hits home and I love to hear other stories too…thats what is great about blogs-connecting and finding kinships, and being snarky together too…lol. I have struggled with a way to make my husband and sons understand how and why I feel like I do so many days. I think spoons may help!

  4. I was sent the spoon theory from a friend after commenting that my family refused to believe that I was really sick and that my struggles to get through a day was just my way of looking for attention.

    I read the article to my 26-year old son. It had no impact on him at all. I am so happy to see that others can get the message intended and have an understanding of what some people are dealing with. Just having your efforts acknowledged makes your burden much lighter, doesn’t it?

    Snort, I am just another stranger (found you via Mwop) but want to let you know that I will be thinking of you during your upcoming proceedure.

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