Thank you so much for putting this up, its exactly how I feel

Oh wow. I’m tearing up right now because this is exactly how I feel with degenerative disc disease. Even my doctors don’t treat me as “that sick,” but I definitely have to choose with care what I will do each day. Thank you for putting it into the words that I could not.

Ah after spending 24 years of my life with JRA, I have to go through such difficulties of life every single day. But the problem is that people cant understand your problems completely and this is the most difficult part of any sickness. Now i am looking forward to try this theory on my friends too :). Hope it comes out great.

Ty for sharing your story. I plan to tell it to my 14 yr old son, who has a very difficult time understanding my illness (Fibromyalgia) mostly because I simply don’t “look” sick. I really hope showing him with spoons, it helps him get it. Also, as a (sometimes when I’m feeling up to it), Jewelry Artisan, I think I’m going to make my 1st metal clay piece – it’s. 99 silver when fired – a spoon!! A GREAT idea to wear around my neck. A reminder & an awareness/conversation piece to let people know ALL ABOUT being sick and not “looking it”! Ty, ty, ty! And may God Bless you always.

Thank you. I struggle with friends and family on a continous basis trying to get them to understand that some dsys I just can’t be a normal 29 year old. I have never been able to get beyond the medical side to express the emotional toll this takes on me. Your story finally made me realize I am not alone. Thank you.

I have Myasthenia Gravis and this describes it perfectly! I shared it on my Facebook wall for June is MG Month and I am trying to get people to understand. I don’t look sick at all, which is what I love but no one knows what it is like day to day. Thanks for writing this and explaining it so well 🙂

I was an engineer, so I use the “battery life” analogy. I like the spoons better, though. Thanks!

My daughter was diagnosed with JR at the age of 2 and I would have loved to have had this to explain to her the limations whe had to live with not to mention the teachers why she couldn’t do 2 hours of homework a night and her friends why she couldn’t ride her bike every day. Beautiful!!!!

As both a registered nurse and a patient with SLE, I find the original post about spoons very valuable and intend to buy a copy to hang in my office at work. Thank you very much for writing something that I believe so many of us struggle to be able to put into words for people. Being a nurse means I am supposed to be able to educate people about different diseases yet I have failed when it comes to SLE. I have actually lost both friends and family members partially due to their inability to understand my illnesses and also due to my inability to explain them. My nightmare began the year I turned 30 and suddenly started feeling extremely exhausted, I lost my appetite and consequently lost a lot of weight and had multiple GI issues such as not being able to eat much without vomiting and frequent diarrhea ( sorry if this grosses anyone out) , night sweats, fevers and swollen lymph nodes. I had been diagnosed with hypothyroidism about 5 yrs before but that was no big deal to me. I took my pills every morning and went on with life. This time, things were not so simple, the size of my lymph nodes and my symptoms made the doctors think I had lymphoma. Only after several surgeries, a bone marrow biopsy and every other test known to man, did they realize that was not the case (Thank God). To make a long story brief, I was diagnosed with Crohn’s disease after further invasive testing along with gastroparesis (confirmed after another test) and was treated with all the standard medications plus remicade and humira after getting a port implanted due to the fact my veins were ruined after tons of needle sticks. The Crohn’s was bad enough to have, it really alters the way you live your life. I still felt bad and continued to have fevers every single night for years! At the beginning of this all, my infectious disease MD sent me to a rheumatologist to rule out lupus etc. Despite the fact that my ANA was distinctly positive, the guy ruled out SLE. I apparently overlooked all of this in my mountain of records and didn’t think more about it since I was told I did not have SLE. During my bone marrow biopsy, I was found to have NO iron stores in my blood which is very abnormal. My infectious disease MD continued to see me to administer IV iron to me and because he wasn’t satisfied I was completely diagnosed. He continued to run tests and about 4 yrs after all this began, he checked another ANA and found it was even higher than it had been. At that point he said he knew I had SLE, it didn’t matter what the first MD said. He referred me to a rheumatologist at a teaching hospital who confirmed that he was correct. I was hoping this would eliminate the diagnosis of Crohn’s disease since it is very uncommon to see them together. Unfortunately, my rheumatologist said she believed I had both separate diseases. I was happy to at least have a final diagnosis but sad to have another chronic condition. During all of this, I discovered I also had PCOS. Needless to say, the number of pills I took grew exponentially. I truly thought I may take more pills than my Grandma who was in her 80s. I was 34 and at 29 had just begun my career as a nurse practitioner. I wanted to get married and have a family but how could I ? All my time was taken up with tests, surgeries, procedures and infusions while trying to maintain a career. That was bad enough… Watching friend after friend get married and then having babies. The worst thing though, and the point of my post really, was the fact that many people do not understand SLE and I always got the old “but you don’t look sick” from certain people. While having SLE, I have been hospitalized many times for different reasons. Beware of getting cdiff my fellow lupies. It makes one feel like they are dying… Anyway, I also had progressively developed joint pain and still got a big lupus headache every evening along with my evening fever over the years which I initially took NSAIDS for but later was switched to opioids due to the fact that I developed severe gastritis and because they thought my pain could be better managed. I initially did not want to take opioids but one of my MDs asked me if I wanted to be able to function and that made me think differently. Opioids were added to my medication list after that. One day my snoopy younger brother who is a paramedic decided to see what I was taking and looked in my bag from the pharmacy on a day we both stopped to see out parents. After seeing what I was prescribed, he proceeded (in his self righteous manner) to tell me how ridiculous it was that I was given such a strong medication and went on and on about how I did not need that and how screwed up I was for taking it. He is the type who knows EVERYTHING after reading about SLE and Crohn’s on google. It was so awful to hear someone I believed loved me, criticize me in such a manner and try to tell me how I did or didn’t feel, basically accusing me of lying to acquire drugs. I was offended but went on with life, not knowing what would happen in the future. My brother ended up marrying a woman with Crohn’s disease as well and suddenly I was full of crap if my treatment wasn’t just like his wonderful wife’s. I was continually compared to her in his mind. He’d go on and on about how Louise was never late to anything due to a Crohn’s flare etc. it was pretty bad but only got worse as time went on. He eventually got his wife Lynn in on the action and I was ridiculed by them for nearly everything I did or did not do. One day I woke up after being admitted to the hospital the night before and Mr. Know it all pranced in and proceeded to tell me how screwed up I was and that I needed help. After the nurse came and gave me the controlled release Morphine that had been ordered, he really went to town and implied that I needed to be put in a locked rehab and then told me all my MDs were quacks. He told me I needed to go to eastern medicine and get acupuncture because my MDs weren’t making me better, they were just making me a junkie. I was so hurt and offended by this. I told him to get out after asking
him how the hell he thought he knew everything after his 6 mos of paramedic school and after he and his wife read web md. The ridicule only got worse although he technically has no business knowing what I take ( we were always very close before his marriage though and I never figured he’d ridicule me). He and his wife began to spread their nasty rumors about me to other family members as well as to long time family friends and long time friends of mine. His wife had no limits at all. She tried getting close to family that my brother had never even bothered with as well as friends of mine I’ve had since elementary school. Every move I made was then scrutinized. If I needed a nap for whatever reason – it was because I was a junkie according to them and what they spread about me. During the time period when my Mother was dying of cancer, I had been laid off so thought I’d wait a couple of months to look for work because she needed someone with her every day then and my Dad had to work. I cared for her every day and made the drive (an hour each way) to do so. I eventually started staying overnight at the hospital with her then went home in the morning to shower and sleep a bit before I came back. If I got a call while sleeping during that time and answered the phone sounding groggy, I was automatically stoned to these people. One night, the woman I considered to be my best friend and who’s family was great friends with my parents for 30 yrs) drove out to “take me to dinner”. I didn’t want to go because I was so sick with the cdiff that put me in the hospital the next day but went because I was just so excited that a friend had finally driven out to see me. I regret going with her now because her mission it seems, was to tell me that everyone was very worried about me because they thought I had a drug problem. I couldn’t believe this! For the record I have only taken painkillers prescribed to me, never have gotten in trouble for taking more than I should, have gotten them from the same MD at the same pharmacy for yrs! I couldn’t believe they had gotten to her too. My brother’s wife clearly had it in for me but my point is that because people do not understand SLE and believe I look fine, they then start to think my brother and his wife may be right… Long story short-ER… Due to the complete lack of understanding of what SLE is and what it can do, I have become estranged from my brother I was once very close with, I have never been permitted to know his little girl or new little boy. He knows I would love to be in my niece and nephews lives but once told me on a rare day he allowed me and my Dad to visit when she was an infant)
That I would NEVER be allowed to babysit her, they had some friends of his wife’s teenage sister for that. I was so hurt because all my life, I have loved babies and babysat all the neighborhood children since I was 12. My Dad and I are not even permitted to view photos of the children on the wife’s facebook acct. My poor father was ostracized when he failed to comply with my brother’s demands to send me to rehab or cut ties with me. My father refused because he knows I am not crazy and a junkie like they’ve convinced so many others. He has consequently lost friends as well. They’ve convinced my Mothers’s whole family of their accusations and they all have disowned me. I believe I have lost so incredibly much partially due to the fact that his wife hates me and wants me ostracized from everyone but figure that all these people who I believed loved me for most of my life have gone along with them because of their ignorance about SLE. I am upset that none of them bothered to ask me about any of it but have to move on with life. I am sorry this is so long… The spoon post really struck me though because I believe there is so much ignorance about SLE and how serious it can be. BTW, I have had a psychiatrist and counselor since I became ill and to this day. My brother knows this but his simple answer is to say my psychiatrist doesn’t know what he’s doing. I am a person who wants to live as fully as possible, I want to continue on in the career I love, I want a family and friends. I sought out the psychiatrist due to depression/anxiety and profound insomnia and he’s been with me through all that has happened over the years. He has never suggested he thought I had a drug problem OR that I was crazy. I wish all the people that no longer speak to me could know that. I am devastated by how much I’ve lost as a result of being ill. I know my medical doctors would also vouch but it seems these people have already judged me. Even my own Godmother has abandoned me and sided with my brother. She cites the fact that after flying 6 hours from the west coast to the east coast for the first Christmas after losing my Mother, I was incredibly jetlagged for about 4-5 days. One night, we were out to dinner and I could hardly keep my eyes open thus, I must be a junkie.

I am wondering if anyone has had any similar experiences. I am trying to let it go and move on yet it still bothers me. I once was part of a very close family with many friends. I have lost half my family and a lot of so called friend partially due to their ignorance about the disease. I too, have gotten strange looks when taking my medicine and can’t stand it.

I doubt I am the only lupie who has to take pain medication at times or who has periodic flares. I feel like many lupies would have been super exhausted after the loss of their mother, a long flight, depression and jetlag?

Any insight would be appreciated. Again, sorry for the length. Thank you for the beautifully written post about the spoons.

I have Interstital Cystitis as well. Have you ever tried Prelief (Ak Pharma)? You can order it at CVS and some other drug and groceries carry it. Helps take acid out of food. I take 2 at every meal.

Thank you so much for sharing this. I, like your friend, don’t know what it’s like but this explanation has touched me in a way that I will cherish for a very long time. I’m honored to carry with me the spoon that you have given here. I feel blessed that you’ve reached out and that I’ve received this part of you and I pray that you continue to have positive and supporting friends and family. The tears that welled up in my eyes as I read this were both a bit of sorrow for what you go through on a daily basis and a bit of bitter sweet that your words touched my humanity and triggered my compassion. In writing this article, you’ve found a way to create many spoons for others and the one you gave me (when I read this) is special to me.

Thank you and God bless you.

Thank you so much for this. I am coping with fibro and being young with small kids. It is difficult to not be able to do a lot with them and to have people look at me and say “You don’t look sick”. I hope this will help those who are not sick to understand those of us who are. Again, thank you so much!!!

Amy, I totally understand this! I feel inept a lot of the time. I have Lyme Disease that was misdiagnosed for years, so now there is a lot of nerve damage. Lupus also runs in my family, so I am being checked for autoimmune also. It is very difficult to not feel like a complete failure at life sometimes. I was once so capable, could handle everything. Now a trip to the mall or a meeting leaves me exhausted for hours. This article really hit home just how many decisions we have to make just to get through the day.

I wish I would’ve seen this years ago..it would’ve saved a ton of time explaining things to other people. I have mitochondrial disease and my daughter has superior mesenteric artery syndrome and gastroparesis….we both use our “spoons” very wisely daily. I can’t wait to share this with my husband, who even after living with me and this disease for almost 20 years, still doesn’t “get” it. My Mom was just diagnosed with lupus a couple of years ago and although she was great in supporting me, now she finally really really understands why some things just arent important to do some days.
God bless and thank you!!

I live in the UK and am now nearly 40. However, I was diagnosed with Duplex Kidney aged 9, I was fortunate that after 2 years of Trimethoprim antibiotics it resolved itself and I seemed to grow out of any problems, although I have some scarring because of all the infections (I remember living on the toilet, my brothers used to have to try and distract me, otherwise I would have eaten and slept there!). I was fine until my late 20’s when I developed Fibromyalgia (this is a chronic pain & fatigue syndrome, IC or painful bladder syndrome is another symptom). When the UTI (Urinary Tract Infection) type symptoms started, I thought it was my kidney issues but like you most urine samples came back negative. I sympathise as the IC UTI pain is way worse than a normal UTI, it can be crippling. I had various examinations before the IC diagnosis but by then I had discovered a couple of things which really helped the IC – obviously limit acidic foods, fizzy drinks and fruit juices or at least drink lots of water as well; especially avoid before bed. If you are having an IC attack, try an antihistamine like Piriton, drink a litre of water and go to bed, it always alleviates the symptoms, as it seems to calm the sensitive reaction in the bladder. Also I found Prelief, a US food supplement and I live on my prelief, take two before bed and anytime I feel that my bladder is getting sensitive. It makes life far more manageable with these conditions. Last year I was diagnosed with Chronic Fatigue Syndrome and even more so the Spoon Theory is relevant to me and explaining to family and friends what my life is like.

i can relate to this theory so well, i am almos 18 years old, i was born with Noonan Syndrome which has resulted in a few heart defects an chronic muscle and joint pain/arthritis. along with many other small thing in the last 2yrs i have been getting alto of lupus symptoms and my A&A test are positive but as other blood test are negative my dr’s haven’t actually diagnosed me with Lupus, even tho i have extreme fatigue and many of the other symptoms, everyday i have to think about what i can and cant do or if i have one big day out be prepared to feel terrible for many days after. this “spoon theory” is a very good way of getting family and friend to have a better idea of my life. i just keep positive and look forward to those very few “good days” i have! my life could be much worse and im very luck to have what is good in my life and honesty there is a lot!!! 🙂

Please can I share this story with my pain management team as they don’t seem to understand what my husband and I have to live with everyday. We are both disabled and are always being told “but you don’t look sick”. Neither of us has Lupus but our separate illnesses need the same daily plan out as yours.
When I first read this I cried, realising that someone else suffered the same type of daily problems and worries. It was our teenage daughter who showed us this and said it made her understand better.
THANK YOU for sharing this with others.

I’m going out on a limb and recommending you look into Float Tanks. They’re helpful for fibro and for migraines, at least. Speak to your doctor about it, see if there’s a float center near where you are. Floating is very very very good for rejuvenation and pure relaxation, plus it can help with depression, since it releases positive endorphins into one’s body 🙂 *bow*

I was diagnosed with seizures, fibromyalgia, cervical and lumbar with migraines & vertigo. Then as I feel worthless no longer functioning in society severe depression has set in. To look at me I look normal.. But really I’m nearly dead inside. My days start out with borrowed spoons… :'(

thanks for your spoon

I have been having vertigo for 4 years. I suffer with depression. I have arthritis in both my hips and lower back. I’ve been on steroids that my body does not get rid of. There are days I can’t function. There are also days I cannot think. My memory is horrible. I have no energy. There are lots of days I have trouble walking. Seems like my body went from 90 to nothing fast. A very dear friend told me to Google “The Spoon Theory”. Kind of puts things into perspective. Thank you for sharing.

I have rheumatoid arthritis, not lupus. But the diseases are nasty cousins. I’ve read and shared the spoon theory before. I just wanted to say thank you!

I don’t have Lupus. But I do have Fibromyalgia and chronic daily migraines, so I understand the “spoons theory” very well. Thank you for putting in a way other people might understand.

The guilt of what I cannot accomplish is crushing and is a spoon-thief of its own. I am trying to learn to accept that I am still strong, just in a different way, and to have gentler expectations– one being that not very many people will really understand what this is like. Hugs to you for all the monsters you battle daily and your strength in your sharing and humor. <3

Absolutely nailed it. I need everyone i know to read this so i can use the spoons analogy too. Thanks