Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Inspiration Short Story


Miss Emily

Recommended Posts

Miss Emily Apprentice

I have been chronically ill since I can rememeber. Something many of us suffer from when we have been misdiagnosed for a number of years. I struggle to have the energy to complete daily tasks and often feel very alone. This story gave me comfort. I finally was able to explain to loved ones, and even myself, what having a lifelong Chronic Ilness feels like. We are not alone! I hope it helps you as well. ~Emily

The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to 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 already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give 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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Thanks for posting this. It will be saved and I will be sending copies to my family. It describes what I and so many others have to deal with every day. I also do so miss the days, even though they were so very long ago, when I could get up and do what so many take for granted. So many times the choices are so hard. I use more than my share of spoons too often. It is hard for others to understand that don't have to deal with the difficulties that many of us deal with. Everything has a price and sometimes it seems so unfair that we often have to pay for days after just having what others consider a 'normal' day. For those of us that were very far advanced in the disease process before we were lucky and got diagnosed those normal days will never be there again. Sometimes it is hard not to get bitter and sad but we just have to learn to live with the number of spoons we have and be thankful that we got some of them back after we healed. But I sure do wish I had been given back more than I got.

Ahorsesoul Enthusiast

Yep, I live my life the spoon way! I have nerve damage to both arms, fibromyalgia and a stroke. Oh yea and celiac. It's spoons for my life.

mamaw Community Regular

Thank you for a wonderful story that can be felt by many. Very inspiring. I certainly can relate ...it is very sad that most healthy people just don't understand how managing everyday life can be so trying & time consuming.

blessings

mamaw

stillclueless Newbie
  Miss Emily said:
I have been chronically ill since I can rememeber. Something many of us suffer from when we have been misdiagnosed for a number of years. I struggle to have the energy to complete daily tasks and often feel very alone. This story gave me comfort. I finally was able to explain to loved ones, and even myself, what having a lifelong Chronic Ilness feels like. We are not alone! I hope it helps you as well. ~Emily

The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to 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 already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give 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

Jestgar Rising Star

Open Original Shared Link

The same story. It just seemed appropriate to credit her site.

ang1e0251 Contributor

Thank you. What a simple and brave way to explain our lives. I'm sending it to my family and friends and my celiac group. It certainly puts into words the almost unexplainable choices persons with chronic illness face. You've inspired me.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ranger Enthusiast

Thank you! I am constantly using too many spoons and lamenting the fact that I just can't get as much done in a day as I used to and, that all my time seems to go into thinking about or preparing food. Maybe I'll slow down and accept the limited spoons that I have. Maybe I'll be a little happier.

Miss Emily Apprentice
  Jestgar said:
Open Original Shared Link

The same story. It just seemed appropriate to credit her site.

Yes, thank you, that is why I bolded and enlarged her name at the beginning of the story. I was not aware she had a site, I was given her story through a friend.

Miss Emily Apprentice
  Quote
The Spoon Theory

by Christine Miserandino

Open Original Shared Link

Thank you everyone for your replies! I am so glad this story helped to inspire you as well :)

I just wanted to clarify that I did not write this story. I had credited the author in bold, Christine Miserandino, at the beginning of the topic following my introduction to it. I was told that she also has a website, www.butyoudon'tlooksick.com. I edited my post to include her title, name, and website at the bottom of the topic as well. Thanks!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,751
    • Most Online (within 30 mins)
      7,748

    Lubette121
    Newest Member
    Lubette121
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • PixieDixie
      Yeah, hard for me to not eat salmon though it does cause varying degrees of irritation to the rash. Alright, guess I’m gonna have to be careful with iodine. Thanks for the article.
    • Parkrunner
      I probably had celiac for 40 years, late 20s to late 60s, before being diagnosed.  I was a runner and had mild intestinal symptoms most of the time.  There was a couple of months in my late 40s where I had significant diarrhea every day for 6 weeks.  Saw two PCPs about it and celiac wasn't on their radar.  In my 30s, 40s, 50s, and 60s I had insomnia, hot flashes, night sweats, muscle cramps, muscle twitching, and cardiac arrhythmia.  It took osteoporosis and fractured vertebrae before I got diagnosed.  Long term undiagnosed celiac will lead to osteoporosis. Once you go gluten-free, symptoms should away eventually.  But you may have other food intolerances.  I happen to be lactose intolerant...
    • Kathleen Mostek
      Scott, I used the AI app Perplexity. I did use your recommendation for research as well, however one med was not the color or shape, after being outsourced to India. I called Blue Cross, spoke to a pharmacist, he also did not have the correct description of the drug from India! 37 additives!
    • Scott Adams
      Your situation is incredibly frustrating and emotionally draining, especially with the conflicting biopsy results, unclear diagnosis, and the added stress of personal losses. Given your DQ2.5 homozygous status, family history of celiac, and past biopsy findings (damaged villi, ulcers, lymphangiectasia), the evidence strongly suggests celiac disease—despite the initial doctor’s dismissal. The nurse practitioner’s call likely reflected the biopsy’s concerning details, even if not formally labeled "celiac." Your severe reactions to gluten, including weight loss, nausea, and bloating, further support this. The gluten challenge is notoriously difficult, especially for sensitive individuals, and your physical and...
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • Create New...