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Understanding & Explaining Chronic Pain Part 1- The Spoon Theory


For those of us with chronic pain, “The Spoon Theory,” originally written by Christine Miserandino, has been widely used to help people with chronic pain explain to friends and family what it is like to live with chronic pain.  The theory has become so popular that many people in pain even refer to themselves as “Spoonies.”

I would like everyone to check out the spoon theory because this week, I would like to talk about explaining chronic pain to others.  There are a few other theories out there, and I have one of my own, so this week we will explore the best ways to communicate to others what our lives are like.

30 Comments to
Understanding & Explaining Chronic Pain Part 1- The Spoon Theory

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  1. Great article to post! The Spoon Theory was brought to my attention a year ago by a friend who also has a chronic illness (diabetes). I find it is a great metaphor to explain the utter debilitation I have experienced from major depressive disorder. I have other friends who find it helpful to explain what they go through with lupus and fibromyalgia. There are so many different types of invisible illnesses, and it can be hard for people who don’t suffer from them to know how hard it is for the sufferers because we often look just fine.

  2. Wow. That is really sad that you would take the time to make personal accusations about someone you don’t know. You would think whoever posted this would have better or more positive things to do with their time. Especially making accusations about someone who has done so much for the lupus and chronically sick community.
    So sad. I feel bad for someone who feels the need to dump on others to make themselves feel good.

    • ????????? In what way did you feel this was a ‘personal accusation’ or ‘dumping’ on someone? The article was completely free of accusations of any type. It was an excellent analogy which will, no doubt, give others a very real sense of what it is means to live in chronic pain.

  3. Superb. I have just pm’d the link to a friend who is sooooo much worse off than I am [Ankylosing spondylitis aka AS – but not in my spine thank goodness, coeliac and signs of fibromyalgia] She has chronic back pain due to an accident and various other issues, T1 diabetes, asthma and NOW has been diagnosed with AS and fibromyalgia.

    Awesome.

    Though I really don’t understand the comment made by “Positive posts” …. has a comment been deleted that they were referring to? Or is the comment referring to the article being published? In which case….Positive Posts…what one earth did you read that was negative or accusatory?? Quite the utter opposite!! *shakes head* trying to understand :/

  4. I’m thrilled to have come across this article, “The Spoon Theory”! I’ve suffered with chronic pain since 2004 – due to an auto accident. Before that unfortunate day, I was a healthy, active, happy 39 yr. old. I could have never imagined how much my life would change in an instant. Slowly, but surely, I found myself depressed and the things I once enjoyed became a burden. At 48 yr old, I find myself struggling every day, just to find one thing to be grateful for. Explaining this to loved ones and friends is difficult. Heck, I can’t say I would understand had I not been in this position! This theory makes perfect sense and I can’t wait to share it.

  5. This was my introduction to this idea, probably because I am as yet mostly in the “kingdom of the well” -where there’s no guarantee of permanent citizenship, as we all know. I’ll share this with other people who haven’t yet encountered it,and keep for the future.

  6. One additional comment_ this is how my mother, and other fragile relatives, have had to learn to handle their lives, too, whether from specific disease I (kidney failure over an long long time; emphysema/copd) or the depredations of aging, which can make the simple act of dressing utterly exhausting.

  7. Having limited energy, due to chemotherapy, makes this a welcome piece as no one looking at me can sense the limited energy of which you speak. Thanks for the spoons……a visual of how the days go at this time.

  8. Thank you for this. While I don’t have Lupus, I have had Fibromyalgia since I was 17 years old – I’m now 41. I’m overweight, diabetic, have thyroid problems, been passing kidney stones weekly for 10 years, have asthma, etc. Most days I feel like I am falling apart… but I keep going. For myself and for the others that depend on me. This explanation also fits for Fibro. The days that I want to just stay in bed, but I am a professional caregiver and that person depends on me to BE THERE. I am going to share this with those I know and work with – it’s a wonderful explanation that is so understandable! Again, thank you!

  9. I was diagnosed with Multiple Sclerosis about seven years ago. At first my mind went directly to famous people whose lives had been severely altered in the worse possible way, like Richard Pryor. But I seemed to be ok-non symptomatic and continued working as usual. Then one day I woke up with the worst leg pain one can’t describe. I was forced to quit my career as a teacher and finally had a morphine pump installed to help. But it was too late to save my career and I was not entitled to SS benefits. A few years later I had a heart attack and remembered nothing about the entire ordeal when I awoke in a rehab facility. Some how, and I will never know how this happened, I awoke with two crushed vertebrae on my spine. That is what changed my life forever. I have spent every second of every minute of every hour…in unimaginable, chronic pain. I can so relate to the “spoons”. I can’t count the number of times I used up all of my spoons just getting ready to go out and then having to cancel and stay home. It robbed me of valuable time with my daughter and much more. Thank you for describing what it feels like to live with chronic pain so well.

  10. Hi my name is Katie, and the way i explain it to love ones, friends…is imagine hitting your finger with a hammer, you know that pain that shoots thru you! well that is what my fingers, wrist, elbows,hips, knees and ankles feel like sometimes.

  11. thank you for your gift of the spoons.Mary

  12. M’am/Sir,
    I did my MS (psychotherapy and Counselling)
    I have been practising similar theory with other means like neatly cut pieces of a paper in my hand and handing one by one to my client, there by explaining him how much he/she can do during his/her life and /or not doing so, wasting time in life.
    This has worked miracle for few in my past practice as Life counsellor for 16yrs.

  13. Thank you. Absolutely brilliant. I may have cards printed. Do something special for yourself, a treat, an indulgence, for me because I can’t get one to you.

  14. Great idea about the spoons. I am a 57 year old woman who was very physically active all my life. When I reached menopause, my energy level dropped significantly, then I got mono with EB virus and was laid up for months. I then had back surgery, but I returned to work after a year of therapy, which did help me a lot. But the bone tired feeling and aches all over my body never left me. I finally had to stop working, because I was physically unable to continue. I was diagnosed with fibromyalgia and it finally bit me on the butt. My doctor said I had hit a wall, where I could no longer ignore the constant pain and my body was not cooperating with my active life.
    I know the disappointment in my family when I am not up to doing things with them, going places, even the store is often too much for me. Now I have diabetes too. It has been a very difficult adjustment for me to not be able to just get up and go wherever I want, do whatever I feel like doing. It’s terribly depressing sometimes. But, like my grandmother (who died at 99 yrs. old) used to say, just keep going Paula, keep moving.
    I will share this with my family and friends, thanks.

  15. I am a Kinesiologist and work with people with chronic pain, a lot of whom are just getting the idea of how to live with it. The Spoon Theory is going to be an excellent tool for me to help them moderate their activities so they can have some “spoons” left at the end of the day.
    Thank you so much for this.

  16. Thank you for finally explaining to the rest of the world how we feel,not that we are just lazy,mentally weak,or such wimps that we don’t face each day and overcome like so many of our stronger more healthy friends.

  17. I sat here and cried when I read this. I suffer from Fibromyalgia, I have CFS, IBS, four hurniated discs, degenerative disc disease,Bursitis in both my hips, austio in both my knees, TMG,I suffer from really bad headaches, I am point tender on more than 60% of my body. I have planterfacitis in my feet. I have been going through menopause since I was 37 and I’m 48 now. And I have to justify for the amount of medication I take to help the pain. I didnt ask for this illness but my doctor told my parents that I have a low pain tolerance. Oh and did I mention I have passed 32 kidney stone since 1999. But I have a low pain tolerance. I wish I could explain it to her the you have. bless you my friend.

    • Wolf-theory? Please tell us abo ut it

  18. YOU GOT INSIDE MY HEAD AND INTO MY HEART…
    THANK YOU…
    IT IS AS DIFFICULT TO EXPLAIN ME, AS IT IS TO BE ME…
    D

  19. My friend whom I haven’t met in person…this is SO RIGHT ON! Thank you for sharing and caring! Thank you for helping me help others whom never could understand what I and others in like case go through! Be Blessed and know that what you do, what you did by writing this, is just making yourself a little more better.

  20. Absolutely excellent article!!!! I will definitely have clients of mine that live with chronic pain read the article, so they can better explain to others what it is like. Thank you for posting this article.

  21. No one asks me how it feels to hurt inside because of an illness…..but today while out driving, I asked myself, why do I have to think about everthing I do, how much I can do, and will this be productive or useful for me to do today? Like I never give myself time off. I’m hurting with what I’m believing I’m getting over and lately finally understand what drives an addict to keep an addiction….(don’t do drugs, drink or smoke)..because it feels good and they are fixed or placated. I want to be in a space where I don’t feel anything and today I was numb emotionally but had to do tons of errands. Maybe the inner anger has to completely get out…anger about how I didn’t deserve to get sick and lose work, now looking for work again…..also seeing first hand the blood sucking health care system…huge, huge things to pay for like a biopsy (5.000) dollars…and I could feel it…my medicare and ins. covered it. Another $1700. hit for recovery room “care”. I had to beg for 2, 1/4 cups of apple juice while I had to fast all night for the test. These stressors and observations have added to my frustration I guess….not being seen as an individual..that’s how it feels to be sick and alone….you have to function in a new way…and I feel numb and angry most of the time…in pain also. Who cares about the spoon theory, pain is pain….we reach hurtful or compassionate people in our battles…..I feel preyed upon through an illness….the only way I hope to dominate my circumstances again is finding a job. God helps me, this I know.

  22. Simply Brilliant Christine! Fibromyalgia, CFS & sufferer from injuries for nearly 24 yrs. after 1st car crash.

  23. Thanks for a wonderful article that I will definately be passing on.

  24. I have R.A. and I want to thank you for the spoons 🙂 now I can explain to my family and friends about my disease so they can understand.

  25. Thank you so much. This makes understand better what my wife deals with taking chemo 5 days a week every week…

  26. no one I know that is healthy can understand what I go through every day, I don’t know if it because they feel helpless and don’t know what to do or say, but I say just listen, that’s all I want is for someone to just listen

  27. My wife has epilepsy. This post made me cry. I understood this concept before reading the post, but hearing it put this way made me yearn for days of freedom where we didn’t have that anxiety and constant need to ration spoons. As a family, our spoons are spread thin, and we collectively need to carry around an extra spoon in our pockets more often.

    The freedom to DO things you want to do- to be able to KEEP doing things after you did your first round of things for the day… all things we take for granted.

  28. as a spouse of one with epilepsy, I understand the idea of spoons, but also the idea that you never ever ever know if you’ll drop all your spoons for a week in a moment of a grand mal seizure. You are no longer in control of anything. Especially brain function.

    Not being able to drive or have normal energy (because of medicines to treat the condition), puts our whole family counting spoons to always weigh if a certain task is worth a spoon or not. Life by spoons is more deliberate, but it’s all we know. The freedom of days past feels alluring, but not worth pining over. We no longer have that life, and can’t hope for it.

    I often wonder what non-sick people feel about our family. But then again, I remember that we can’t worry about that. The mere fact of worry takes away way too many spoons in my life.

 

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