My friend sent me this link over a year now, and ever since we’ve been spoonie best friends as she also has a hidden illness.
The woman who wrote this (a fellow spoonie) Christine Miserandino has Lupus. During a meal with her friend, her friend asks out of the blue what it feels like to have lupus and be sick:
‘I was shocked not only because she knew all there was to know about Lupus. She came to the doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity and somethings no one healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.’
How does one even begin to explain that?!:
‘How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being affected, and the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. F I can’t explain this to my best friend, how could I explain my world to anyone else?’
And this is where the spoon theory is born:
‘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.’
The spoons are in control, your illness is in control… What a great and perfect analogy of describing illnesses!