"Why are you always tired?"
"We missed you again in our outing."
"I hate the fact that you can't make it to my party."
"Why do I have to drive and visit you home? Why can't it be my turn?"
"Oh you're once again acting that there's so much pain within you."
"You absolutely look healthy, you don't look sick!"
Just some of the words that a Lupus patient, a chronically ill or an autoimmune disease patient would hear from people that surround them.
If you were a patient or a family of a patient and you are trying your best to understand more of the disease and how to live with it, you may be familiar with Christine Miserandino who made an essay about "The Spoon Theory" .
The Spoon Theory Essay is a story of how Christine answered her friend's question of "How does it felt like to have Lupus?" "How was it to be sick?" Christine used the spoon as a metaphor representing as the energy of a chronically ill patient who's disease is intangible and cannot be seen as obvious to everyone, she also referred the spoon as the energy level of those who have disabilities.
We all know that spoons are commonly used for measuring. She describes that a normal person has unlimited number of spoons and how free can a normal healthy person can be in making decisions and making their activities planned and sometimes unpredictable. Somehow, a person with disability and a person with Lupus or chronic illness has limited amount of spoons to consume for their daily life task and activities.
Living with Chronic / autoimmune /disabilities you have to make choices. Choices that are very limited because of the hindrances caused by the disease. Unlike being healthy,you can be carefree of getting home early in the morning from partying all night long, or extending long hours to work or eat unhealthy foods.
Being unhealthy is being conscious of how many spoons are left? Should I take some of my spoons for tomorrow? But, what if I catch a fever, an infection or an unbearable pain? Will there be enough spoons that I can still consume?
I remember some days ago, I am talking to a friend too, explaining my situation because I am sick. She asked me, why there were times I am seeing you closed eyes and as if you're praying in the middle of a gathering?
I calmly explained to her, being sick isn't easy. There were days I am feeling good, then there were days that I am not feeling good. When I feel good, I feel that my energy is beyond the ceiling. While, when I am not feeling well, I have to preserve the energy and distribute them accordingly to all the lined up plans I have. When you see me closing my eyes, I am trying to at least preserve the remaining energy that I have for me not to cause any scene of flares or still try to be present with you all.
I know for us who are chronically ill, it's hard for us to accept that we need to SLOW DOWN! We need to take one step at a time, especially if we are very active one before. It's painful for us to be left behind, to be absent to the people that are special to us, to be unable to do the simplest basic things for ourselves. The disease doesn't only hurt us physically but it also hurt our personality.
To the people close to us, families, friends, office mates, boss, etc., We hope you can understand that there were days that our spoons are less but behind all these struggles we go through and we fight just to be with you, be part of you and be of ourselves regardless of the limited spoons we got.
How many spoons were left to you? What are your experiences you can share in spending your spoons for the day? Share it with us in the comment box below or visit our social media!