Using the Spoon Theory to Describe My Experience with IPF

Using the Spoon Theory to Describe My Experience with IPF

younger than 30

The “Spoon Theory” is a tool that you might find helpful when explaining your chronic illness and the limited energy it allows you for completing activities of daily living. The Spoon Theory uses spoons as a visual representation to quantify the energy. For example, you might start out with six spoons and the different tasks necessary to complete your day use up those spoons — often using more than one if the task requires a lot of energy.

According to the theory, spoons can only be replenished when a patient is resting for a significant amount of time, such as in sleep overnight. When a patient runs out of spoons, patients have no choice but to rest until spoons are replenished.

The Spoon Theory was developed in 2003 by a student describing her experience of living with lupus. This disability metaphor is helpful when planning and rationing the limited energy of someone with a chronic illness. Ordinary tasks such as getting dressed, working, or making meals might not seem cumbersome for people who have unlimited energy stores. But for those of us with a chronic illness, completing these tasks likely means that other activities of daily living such as cleaning or running errands, have to be done another time.

It is intensely difficult for someone with a chronic illness to “just push through” and get all of the activities of daily living done that we want — it becomes all about balance. If we do try to push through, or complete too much, the consequences can be severe.

The Spoon Theory has been helpful in explaining to my friends and family why I may not be able to complete a task or activity with them, especially if the days prior have been busy.

Following are two examples of times I used the Spoon Theory to explain what I can and cannot do with my friends and family members:

Craft show and canceling breakfast

I recently participated in an event that showcased vendors selling handmade products. It was a successful event for me as I happily made some sales, met other talented vendors, and enjoyed the company of people who shared similar interests in crafting. It was a full six-hour day, and by the end, I was exhausted both physically and mentally.

I love talking with others and learning from them, but to do this, I have to mentally focus. After a full day of this, I am tired. As a result, and as rewarding as the event was, I had to cancel breakfast with a friend the next day. I was in the negative spoons category, as I used up the ones I had at the craft show and feared that if I pushed myself, I would risk getting sick. I slept all day after the show, which is what I needed to fully replenish my spoons.

Attending a medical appointment and taking a sick day

Ideally, I would like to be able to work a full day and schedule medical appointments in the evening. However, this is no longer something I can do. If I work a full day, then I have very limited mental or physical energy left for my appointment and vice versa.

I recently had an important medical appointment and wanted to feel energized and mentally alert for it, as there was much to discuss. As a result, I had to take a sick day from work. Was I sick? No. But I had to take that time off work so that all my spoons wouldn’t be deplenished before my appointment.

IPF patients: Would you consider using the Spoon Theory as a tool for helping others understand your energy limits?

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

8 comments

  1. Jim Rowley says:

    Thank you, Charlene, for the interesting spoon metaphor. I try to read all of your articles, so don’t quit writing assuming
    no one is paying attention.
    I am lucky to have gone through a lot of life without this disease. I am now 74 and coming up soon on my fifth anniversary dealing with it. I’ve concluded that the 3 to 5 year life expectancy seems to be playing out as predicted, with my breathing during the last 6 months becoming much more difficult. If I try to do anything that requires exertion, I get seriously short of breath and start coughing uncontrollably. This continues until I sit for awhile or lie on the bed with oxygen — waiting for a replenishment of my spoons.
    Jim

    • Charlene Marshall says:

      Hi Jim,

      Thank you so much for reading and contributing your comments on my column! I appreciate everyone reads my columns, so thank you for letting me know that you’re following. I’m so sorry to hear of your breathing difficulties in the last 6 months. This disease is so unfair, and I wish this weren’t the case for you. I hope your disease stabilizes out again for you. I will be thinking of you and wishing you nothing but the best.
      May your spoons continue to replenish with rest and relaxation, Jim!

      Warmly,
      Charlene

  2. Joyce Douglas says:

    What a clever idea to use to explain our limitations with our illnesses. I definitely will use it to complete my explanation as well as to persuade my own self that I need to replenish my spoons when I feel the need to. I often do not do this and just feel badly when I wear out. How silly this is of me. I’ll definitely do better using the spoon method. Thanks Charlene.

    • Charlene Marshall says:

      Hi Joyce,

      Thank you so much for reading! I can’t say that I came up with the metaphor or the ‘spoon theory’ but it certainly is something I refer to on a regular basis when trying to explain my limited energy to friends and family members. I call other people living with lung diseases fellow “spoonies”, which always makes us laugh. I hope it will help you explain to your friends and family members as well, and that you’re able to replenish your spoons when needed. I hope you are doing well and may your spoons continually be replenished through rest and relaxation.

      Sincerely,
      Charlene

    • Charlene Marshall says:

      Hi Frances,

      Thank you so much for reading my column and sharing that your Mom is finding the spoon theory helpful. I hope this continues for her and that others respond with both understanding and compassion. Us “spoonies” are in this together. I wish you and your Mom well!

      Sincerely,
      Charlene

  3. Fay Russell Lumpkins says:

    Thanks Charlene, this idea is exactly what I need! Explaining how I feel to friends has been difficult/frustrating to say the least! I don’t look sick and have always been an active person. I wish we could design a community we could move to and live our lives in peace! In the meanwhile, we just have to keep educating people!

    • Charlene Marshall says:

      Hi Fay,

      Thank you so much for sharing your comments in response to my column on the spoon theory. 🙂

      I didn’t come up with it, but it is a metaphor I’ve been using for awhile now to help my friends and family understand my choices pertaining to energy and physical activity while living with my disease. I do hope your friends and family can understand this a bit more, when you use it to explain to them why it is so important for us to be intentional in what we choose to do in our day. It can certainly be frustrating and upsetting when people don’t understand, I agree! Sometimes I also wish that I could just surround myself (in person) with people who understand what it is like to live with this disease. If I did this, I feel like my frustrations would be a lot less, as oftentimes I get upset with people who just don’t understand what I need with this disease.

      Take care Fay, and know that you can always reach out here. You’re making a difference to all of us when you choose to educate others about IPF and increase their understanding of our disease.

      Warm regards,
      Charlene

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