Spoons

Wow, I cannot thank y’all enough for your amazing response and support to my last post about my chronic illness. It really, really means a lot to me. But I also realized how little some people understand or realize about chronic illness, so I thought it would be important to talk a little more about what it is really like.

First, it is unpredictable. I may feel relatively “normal” for a week or so, then the next week because unable to even get out of bed (like this week). It hits without warning, and without reason. I might take all the precautions to be healthy, avoid certain things, stay hydrated, etc. but that can never stop it from happening anyways.

Second, it is nothing like normal illness. If any of you have ever had a bad case of strep, you may know that feeling of being completely drained, where your whole body aches and all you can do is sleep. That is kind of what it can be like having chronic illness, only all the time, in varying degrees. Chronic means chronic. It isn’t going to go away, or even get better. There is no cure in most cases. I can’t get healthy by working out more or juicing or meditating two hours a day. Making healthy choices can help my symptoms, but it will never truly go away.

Third, everyone is different, and no one can judge someone else’s experience or illness. One person might look relatively healthy or normal on a day-to-day basis, like me. Another might have visible symptoms such as bruising, hair loss, or need for a wheelchair or walker. Just because I can look healthy, doesn’t mean I am or even am feeling well. On the other hand, just because they look sick doesn’t mean they are useless or less than anyone else. Oh, and not judging someone else also means no advice or solutions, even if they are well-intentioned. Instead, they usually come off more condescending and hurtful than helpful. “Why don’t you try working out more?” sounds more like “If you weren’t out of shape, you wouldn’t be sick.” Not to mention, see last line above.

The Paper Butterfly showed me this great explanation of chronic illness, called the spoon theory, written by Christine Miserandino of the But You Don’t Look Sick blog. You can read the full post here, but here is an excerpt that really breaks it down. It is a little long, but absolutely worth the time.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon.

When she jumped right into getting ready for work as her first task of the morning…I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs…Getting dressed was worth another spoon.

I stopped her and broke down every task to show her how every little detail needs to be thought about…I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?”

I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.

It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

If you are healthy, you can never truly understand what it is like to be chronically ill, and I am really glad you don’t have to. But having an open mind and being educated can be a step towards understanding what someone goes through, and being able to better support them. It really does mean a lot.

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21 thoughts on “Spoons

  1. Well apparently I missed a really important post! I’m sorry to hear you haven’t been feeling well. I know, in a way, what you are going through since I’ve had type-1 diabetes since I was a kid.

    I can’t say it’s the same as your condition – I don’t so much have bad day’s as much as bad moments. Also the explanation you gave doesn’t quite match up with how my disease has to be managed. However, having to deal with something all your life, the need to manage things carefully lest you end up face down in a toilet all night, and the inevitable fact that no matter how carefully you take care of yourself it might still decide to punch you in the gut, All of that I get.

    I hope you’ve started feeling better, and here’s hoping that all of us see cures within our lifetimes.

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  2. I’m glad you found the spoon theory useful. I haven’t found anything else that explains chronic illness that well. I got goosebumps reading through the spoon excerpt ;___; It’s been years since I last read it, but it’s even more poignant now. I still remember showing it to my sister and she said she was bawling because she had no idea it was that difficult for me. It’s taken my husband many years to realize I have certain limitations. The diagnosis of Ehlers-Danlos Syndrome helped him understand that there was something really wrong with me, and that I wasn’t faking it.

    The thing that is so depressing about chronic illness is that you know you will have it for the rest of your life. It’s not like a cold where you know it sucks for 1-2 weeks, and then it resolves. Chronic illness doesn’t ever resolve. Sometimes it gets worse, better, or stagnates, but most people with chronic illness will never have another day in their life when they aren’t somehow affected by it. That is part of what makes it so difficult and depressing.

    Something as simple as seeing a movie, I couldn’t do for many years. Friends would ask me if I had seen “such and such movie that just came out.” I used to be too embarrassed to admit that I couldn’t sit for more than 1 hour without excruciating pain in my hips. Over time I realized I didn’t have anything to be embarrassed about. I have very little control over my health. If my friends had a problem with it, then I didn’t need them in my life. I actually lost all of my real-life friends when my health deteriorated, but I made other friends through fanfiction that have been the most kind, supportive, and amazing friends ever. One of the cool things about friends over the internet is that you only stay friends with them if there is a true soul connection. Otherwise you just drift apart. I’ve actually met some of these friends in person, and upon first meeting them it felt like we had known each other forever. We send each other Christmas presents, Skype, share pictures of hot guys, cute videos, pics of our family/pets, etc. Many of my friends share my love of bishies, which are beautiful (often Asian) men XD One of the blessings of my bad health has been discovering these friends.

    It sounds like your family and boyfriend are very supportive, and that’s awesome. My parents aren’t supportive and have been quite cruel about it. My mother told me my health issues had turned me into a monster, and I was also anorexic at the time, so she just made me hate myself so much more. When she said that I had my second labral tear (I’ve had 3 labral tears and 3 hip surgeries) but no diagnosis so she thought I was just being melodramatic about my pain. I have distanced myself from my parents due to their emotional abuse. I used to keep seeking acceptance from them, but I realized I don’t need it. The only person I need acceptance from is myself. My mother probably has mild EDS (she doesn’t want to be diagnosed), and has her own health issues for which I have never tried to minimize. She doesn’t like to talk about it. We all cope with illness in different ways, and I don’t think there is a wrong or right way to go about it.

    I still experience illness shaming. That was part of what made the fanfiction drama hurt so much. I actually have a lot of health problems because of Ehlers-Danlos Syndrome, but my hips were the worst part. Due to pain, depression, anxiety, multiple surgeries, and fear I wasn’t always able to write consistently. And I was honest about it because people would ask why I was gone for so long, and I put it in my Author’s Notes along with other updates on my life. The only health issue I talked about was my hip problems, so just the tip of the iceberg. I was attacked publicly multiple times for my decision to share my hip problems, which I think is pretty awful. If you have to attack someone because they have a debilitating chronic illness then I think that says something about the kind of person you are. I’ll write a post about it someday because it’s not okay to do that. But I’m not sorry for talking about it. It was my story, and if they were so offended by my health issues, they should stop reading.

    Another thing I learned is not to compare myself to others, especially those with illnesses. A friend of mine has hip problems, and she told me she felt bad for complaining to me about it because mine were worse, but her hips were still bad. I reassured her she had reason to be upset about her hips and that it was okay to share her problems with me. There will always be someone better or worse than you no matter how bad things get, so I think it’s pointless to tell someone to be happy or glad because it could be so much worse. My sister had neck spasms for a week after a massage, and she was bawling because the pain was so bad. It happens to me on a frequent basis, but she was not familiar with pain like that, so I comforted her about it instead of telling her it could be worse. Some of my friends also deal with severe health issues, and I have learned that saying things like, “It will be okay,” or “I hope you feel better,” can actually make them feel invalidated. So I just try to be there for them, and hopefully distract them with something cute or funny.

    Sorry for the long post :$ Anyway, thanks again for sharing your story 🙂 It takes a lot of courage to talk about these things. You a beautiful, brave, and courageous young lady and inspiring to so many because of it. Keep fighting and be proud of how strong you are. I have learned to accept my disabilities and I try to work with them instead of ignoring them because then I have a huge spoon debt that takes forever to replenish. My husband understands that now, as do my friends. *Gentle hugs* :3

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    • Oh my goodness. I am so sorry, I cannot believe that anyone would be mean to you for being ill, especially your own family! I can’t even imagine going through this without the support of my boyfriend and family. I agree that a diagnosis has helped, but if they never believed in me in the first place, I wouldn’t have gotten a diagnosis. I am glad that at least most of that is behind you, and I hope you find a lot more support now. Know that you are definitely not alone in this, and not everyone is like that. I have found a lot of cruel people, but there are more kind people than you think, especially in the writing community. But thank you so much, you are about to make me tear up. I really appreciate it. Hugs. 🙂

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  3. Most people can’t tell I am chronically ill when they first see me or hardly know me. I like what you said about just because you look healthy, doesn’t mean you are. And just because you are ill, doesn’t mean you’re useless or less than others. I think it’s hard for me to find the balance between letting people know I am sick and simply cannot do certain day-to-day things, and living a relatively normal life.
    Thanks for this post and I hope you feel better for a while now. 🙂

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    • Yes! I think people judge me all the time because I look healthy. For instance, I have difficulty even just standing for long amounts of time, and need to sit. People see that and assume I’m just lazy, since I look young and healthy, but they don’t realize. It can be difficult, because like you said I don’t really want to let people know all the time, but sometimes it is necessary. Thank you for reading and commenting!

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  4. The spoon analogy brought tears to my eyes. I’m fortunate that my condition allows me to lead a relatively normal life, but when it hits, I’m down for the count – sometimes for days, and even weeks. I love this post and your courage to share your story and build understanding about chronic illness. You’re a rock star! ❤

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  5. Victoria, I am doubly glad I named my main character after you. You are a tough cookie. This is a challenging way to live and you sound like you make the most of every moment. I admire your strength and honesty. My Victoria would like you very much. XO

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  6. Once again, Victoria, I’m both inspired and amazed by your bravery. Sometimes I forget just how fragile the human body is, even against itself at times, and it breaks my heart to think of all the good people being burdened by chronic illness and any condition that isn’t “obvious”. Thank you for opening my mind a little more, and I hope you bounce back to a pain/exhaustion free state ASAP!

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  7. Pingback: What’s Up Wednesday | Coffee. Write. Repeat.

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