When you are sick and really feeling terrible, there is nothing that can be more irritating than when someone says to you, "At least you don't loo sick!" While they may not mean this as anything but a compliment. In general it is NOT how most with an invisible (chronic) illness will take it. To hear you don't look sick when you have an illness where your body is attacking itself on the inside but can't be seen on the outside is very very frustrating. So much so that fellow Spoonie Christine Miserandino developed a way to explain how we are feeling. Her piece is called The Spoon Theory. If you aren't familiar with this theory you need to be. Christine decided that she needed to find a way to explain how well or poorly she was feeling to her best friend and roommate. Her roommate was the person who went to doctors appts with her, saw her sick and saw her cry. She stated that if she couldn't effectively explain it to this person, how could she explain it to anyone. She thought about it for awhile and decided using spoons would make the most sense. And at this point The Spoon Theory was born. And stated, "At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands."
Christine went on to explain that the difference between a healthy person and someone with a unhealthy person is that someone with a chronic illness has to make a choice and choose what they do or don't do every day! When a normal healthy person does not have to make that choice.
"Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."
Christine goes on to talk about how at the beginning of the day the chronically ill start with X amount of spoons and that's how many you get. No more, no less. And through the day EVERY SINGLE ACTIVITY that you do costs you X amount of spoon. That's everything, including getting dressed, taking a shower, putting on makeup etc. All activities that most would be thinking that are simple and easy things that shouldn't be a problem. However, activities like that are the ones most people will take for granted and do without a second thought. That being said, those who have a chronic illness may have to forgo those activities, or others, like drying their hair and putting on makeup (simple as they may seem). Those things may definitely be skipped if there is an activity later in the day that they know will take more spoons and they really want to take part in or attend. Even if we may be able to do those simple tasks like those what were mentioned above it make take use 5 times as long as it used to. Simply because we don't have the energy to get them all done at once like we once did and may require frequent breaks through the getting ready process so that we don't risk exhaustion before whatever it is we are doing! Those of us with chronic illness have to do what we can to conserve spoons so we can make it through the day.
Let me give you an idea of what a work day looked like for me before and after my Lupus diagnosis.When I was working as an RN, right out of school before I was my first life changing diagnosis, my mornings were very different then they are now! 7-10 years ago every morning I would get up and get dressed, do the normal tasks like deodorant and brushing my teeth as well as doing my hair, which could consist of being in a pony tail/bun or down and curling it! I would put on my makeup almost every day and eat breakfast at home before leaving. I would always leave for work with enough time that I could ensure that I would arrive on the nursing floor a full 30 minutes before I started my shift so I could fully prepare for my day. I would work a full 12.5 hour shift, most of which I was on my feet and going, going, going for the whole shift. I would sit very little usually only to chart and long enough to eat a quick lunch maybe 15 minutes, if I was lucky. At the end of my day I would arrive in the room where we gave report, right on time because I was usually busy until it was time to give report and leave. Once I left work, I would often go out to dinner or even out to the bar for a fun night out after work. I could easily survive on 5-6 hours of sleep and do okay. During part of that time I was also in school for my bachelors degree, so I also had to work on studying, writing papers and going to classes online and on the computer, as well as spending time in lab or clinical.
The previous scenario is so different then what it's like now (most recently). When I was working as a hospice nurse in the field last year, I would wake up maybe 20 minutes before I had to leave, if I was lucky! Leaving just enough time to drink a yogurt shake or maybe something as i was driving, jump in some clothes, put on deodorant and perfume and brush my teeth. (Much different than the way I did before) Most days I would work anywhere from 4-8 hours a day depending on what my day was like, and how far i had to drive. By the time I got home I was in so much pain and so stiff I could hardly get out of my car and walk into my house. And most days I would shower and fall into bed. Even if i has only worked 4 hours. And this is where I would stay until the next day. I wouldn't sleep that whole time most days, but I didn't have energy to do anything else. And my spoons were totally and completely gone. There was no more meeting with friends for dinner after work or going out for drinks on a work night. And most nights I require no less then 8 hours of sleep, more likely 10-12 hours. And many times on my days off I would spend resting because I was tired from the day before and knew I need to rest up for the next work day.
When I came across Christine's Spoon Theory, I found it to be the perfect way to explain my days and how I pick and choose what I do and don't do. Over the last 6 years I have used this very theory many many times to explain what is going on with me and why I may cancel plans from time to time. When anyone new comes into my life I often times will send this to them so they can get a bit of an idea of what I have to deal with on a daily basis. And I suggest that all of you do the same. This works for all chronic issues. Not just Lupus and Fibromyalgia. It can be used to explain the energy conservation requirement of any condition that causes chronic pain and chronic illness. So since I could not show you Christine's complete theory, I want to provide the link for you. The Spoon Theory in its entirety can be found by clicking that link. I recommend all of you read it even if you have read it before. I also recommend that you keep the link so you can send the theory to any friends or family who you feel needs a better understanding of what you deal with all day every day. I also hope that those who you share this with will have a little bit better understanding. And will maybe refrain from using those awful 5 words we all hate so much to hear, "But you don't look sick!" If you are a friend or family member of someone with a chronic illness please take time and read Christine's whole piece. It would honestly mean so much to the person in your life who is a Spoonie!!
Please share this post with anyone you might know who is dealing with a chronic illness either as the chronically ill, or as family or friend of the chronically ill, and you feel that they could benefit from it!
I also want to send a shout out to Christine Miserandino for allowing me to quote her writing in this post!