If you don’t truly understand how draining it can be to live with chronic illness, including chronic pain, go read The Spoon Theory right now. In 5 minutes it forever changed my own awareness of my wife’s arthritis and bone pain.
On Twitter I saw “spoonies” raving about this months ago but I finally took time to read it. 2,100 words; worth every second. Also, on Twitter follow @bydls – “But you don’t look sick!” – and explore their smart website, where they’re wisely selling posters of the story for doctors’ waiting rooms, and everything else imaginable in modern outreach through social media.
These are smart people, and this is a powerful piece of writing.
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Hey, Dave!
I love this story. I read it quite a while back, and the wording brings up such clear mental images that I’m sure anyone could understand it — even those hard-headed people who continue to insist we’re not sick. It should be subtitled: “Invisible” Illnesses for Dummies
I only wish I’d found it when I was first diagnosed. Maybe my sister and I would still be talking instead of being silent for 13 years now. Then again, maybe not. She knew someone with FM who was able to continue working. (I wonder if there’s a story for those people out there, somewhere?)
Annie
I first read about this when struggling to make people understand just what I was going through in my battle with endometriosis – the invisible battle that they could not see and thus could not understand. Not only did this help others to understand, but it helped me to understand as well! As someone who’s immune system simply isn’t what she wishes it to be, this theory helps me on a daily basis to remember that I have only so many spoons to work with and to use them wisely!
It is worth mentioning that Spoon Theory is equally applicable to mental health issues as well as chronic illnesses like endomitriosis, arthritis and fibromyalgia. The struggles are just as real and invisible.
I have referred literally dozens of people to the Spoon Theory page in my personal, professional, and educational lives. I always appreciate the sudden “aha!” moment when they get it.
Agreed! It’s more universal than I would have imagined.
I even find it useful in reminding ME why I need to get enough sleep!
I struggled for years with a rare disease, but no diagnosis. During months of sleepless, pain-riddled nights, I happened upon a small internet support group of people with symptoms that matched mine. I took information to various Kaiser doctors in various regions (we moved a lot for my husband’s career). No luck, no diagnosis, get off the internet, if will make you crazy, yadda yadda. Since there was no treatment, I let it go.
I struggled though. I had doctors tell me I was lazy, I needed to eat better, exercise more, sleep better. I was so tired of the pain I had a strictly regimented life full of medical advice du jour. I would complain that it didn’t help, and be labeled non-compliant, drug seeking, doctor shopping, etc.
My relationships suffered. I bought into this idea that I just wasn’t trying hard enough. If I were just a better patient, I’d be all better. So I’d pushpushpushpush until I’d collapse in exhaustion, and be out of commission for months at a time. People could not understand why I could be normal for months at a time, and then completely dysfunctional for months at a time. Even those I loved and trusted most later admitted to thinking me the worst kind of hypochondriac.
After a bout with cancer (misdiagnosed for 5 years), I reached my threshold with the chronic pain, uncertainty, and being thrown under the bus. I went back to the support group, to see if there were treatments, cures, some hope, something to make it worth fighting again, for a diagnosis, for treatment, for help. I am lucky to have physical manifestations of this disease. Unlike fibromyalgia, there are thousands of benign tumors riddling my body. They weren’t a figment of my imagination. That kept me sane.
The other thing that kept me sane was the spoon theory. For years I’ve sent it to the doubting Thomases in my life. Often they turn a blind eye, but it brings me comfort. We unicorns offer each other spoons by way of support when one of us is on our last spoon, with a 20 spoon day ahead, no ifs ands or buts.
Even when others don’t get it, *I* get it. It helped give me my sanity back. No doctor was ever again going to make me think I was lazy, or crazy.
Making that decision to believe in myself no matter what was a turning point. Doctors know medicine, but I know my body, and nobody is as vested in keeping it healthy as I am. When I am tired, disheartened, when I’ve heard one too many horror stories from my fellow unicorns… I rub that spoon in my mental pocket. It is a symbol of the power I have. The medical gatekeepers can block my access to care, but they can never again block my faith in me.
BTW, I had a small epiphany reading this entry, that it would be useful with patients with chronic illnesses to ask them how many spoons they have rather than their pain level. Chronic pain gets to be white noise at some point, only the pitch changes. But spoons are a more relevant measure of my overall well-being.
Great addition, Unicorn. Thanks for this!
How long ago did this start, and when did the “stay off the internet” advice happen? And what is your ultimate diagnosis re these thousands of benign tumors, and how was this discovered?
Hi Dave,
You’ll have to forgive me, because sometimes the inflammatory component of my disease/disorder whatever it is makes me a little… dense. Captain Obvious if you will. When you say when did this start, do you mean the disease? If so, some of the key symptoms I’ve had as far back as I remember. It kicked into overdrive in my late 20s. I was diagnosed with Dercum’s Disease/Adiposis Dolorosa in 2006 by Dr. Karen Herbst of UCSD. I was one of the subjects in her initial study on this disease. In fact, she makes a comment about two of her patients reported estimating themselves to have thousands of tumors. I was one of those patients. I came to that conclusion following numerous biopsies of what were believed to be single lipomas only to have somewhere between 5-10 of the little buggers pop out each time we excised one. I tried counting the larger lipomas to get an estimate, and when I hit 30 on one arm, I gave up. Since I have lipomas everywhere from head to foot… multiplied by 5…. I figure I’m easily over 1000 of them in me somewhere. Dr. Herbst noted that was a strong probability.
The stay off the internet advice happened several times over 10 years. The most notable recent example is the Kaiser surgeon who in 2008 asked for more information on my condition. I gave him Dr. Herbst’s contact information, the journal that had published her study, and website which at that time hosted her research and recommendations. He excused himself for a few minutes and came back quoting Wikipedia (full of outdated and frightfully incorrect information on Dercum’s) and told me to stay off the internet, it’s dangerous if you don’t know what you’re looking for. 8^0
There is an inflammatory component to Dercums. I had a multitude of symptoms occur all at the same time, most of which anyone with Fibromyalgia would recognize, with the added fun of the fat disorder component. They all seemed unrelated to me, what would lipomas have to do with brain fog and fatigue? And it couldn’t have anything to do with the chronic pain, the doctor’s assured me lipomas don’t hurt, and they are common (my understanding is having one is relatively unusual, having thousands? Not normal).
So I would ask my doctors and be told the advice I mentioned in my prior post and I would try harder, because what did I know?
Eventually the denial was wearing thin, and one night when my pain level was hovering around a 9, and I could not sleep, I googled my particular constellation of symptoms, figuring it should narrow the results a bit. It led me to Dercum’s Hope, and the lipoma forum. I read story after story of people who’s onset, progression, and failure to gain a satisfactory diagnosis was the same as mine. Eventually some did get a diagnosis of Dercums. Others got the standard “lipomas don’t hurt, diet and exercise, get more rest, you must be doing something wrong”.
As I mentioned I took the information to Kaiser multiple times, I got nowhere. I left the boards, exhausted and disheartened, and frankly a little jealous of those who got a diagnosis, and help.
Finally in 2005 I hit another high with the pain, I’d had cancer, and I was tired of the medical bogeymen hiding under my mattress. I had some fire in my belly to try again, so I joined the support groups. There were more studies being done here and in Europe, and I finally learned of Dr. Herbst and her research into Dercum’s. I had an appointment with her in San Diego, and I was enrolled in her study.
The rest as they say is history.
The thing that galls me the most is the waste. I was a young mother when this started. All told, between wasted repeated visits to be given the same bad advice, and not understanding the peculiarities of my body leading to epic post-op complications, NOT diagnosing me with Dercum’s probably cost Kaiser at least 100k, if not more. My husband suffered, my kids suffered, and I was pretty well completely disabled for 10 years. I quit my job, stayed home with my son, and later forays into the workplace were painful for all involved. I got to the point I thought I had alzheimer’s, I could not figure out how to get home from the gas station or the grocery store. I would call my husband in a panic, tell him the streets I was at, and he would have to be my personal GPS (we finally bought one, once we had the cognitive issues under control). Frankly I shouldn’t have been driving, but once again, Kaiser doctor’s assured me it couldn’t be as bad as all that. I was too young.
I used to write for a parenting blog, but couldn’t churn out a coherent paragraph, couldn’t fill out a simple form. I couldn’t understand the request, nor how to answer the questions. Thankfully that is the one remedy that has been a smashing success, my cognitive function, while not where it was before, is back in the functional range.
What did that cost society? What did it cost other Kaiser patients?
We went in and out of cycles of debt. My husband is in Healthcare IT (ironically enough). He earns an excellent living. We’d spend through our savings, credit, and still never finish a treatment before the money ran out.
We have just rented out our home and moved cross country. I’ve done enough journaling and experimenting to know that the key issue for me is keeping the inflammation at bay, and lots of organic veggies, and lots of Omega 3s help in that regard. Interestingly, I’ve always struggled with my weight, now we know due to lipolymphedema from the Dercum’s. I had cut down to 1500 cal/day and 10% fat under the ubiquitous “eat less, move more, cut the fat” advice. When I dramatically increased my caloric and fat intake, particularly polyunsaturated fats I triggered my first win over the scale, cholesterol, and CRP). Thankfully my body is all too free with the symptoms when I am failing on the inflammation front.
I fulfilled my life-long dream of adopting my own wild mustang and training her myself. We bought acreage in Michigan, where we could afford some land and a house. I hope to have my horses here on my property this month. They are the best physical therapy, and the change in my health status is remarkable, again significantly lowered CRP, lowered cholesterol, lowered blood pressure, another dramatic jump in the cognitive function. Best of all, they keep me off the pain meds somehow. Since I’ve been holding on to my last oxycodone for 2 years, that is a blessing. I’ll take any form of pain relief that doesn’t involved my being at the mercy of some poor doctor who has the sword of damocles/DEA hanging over his or her head. Meanwhile I have that one last pill rattling around in a bottle. It too, keeps me sane. I bite the bullet as best I can so as not to squander that last dose, but I know if I ever hit a 12 out of 10 again, I can have a few hours peace.
I’ve been too many times through the appeals cycle, and this summer had another nasty run in with a provider that did untold damage, so I decided to get off the medi-go-round. I will live the cleanest life I can, raise as much of my own organic food as I can (not to get into that debate, but since many pesticides are fat soluble, and I have a fat disorder, it’s a bad combination) slowly get off my medications, and keep putting the puzzle pieces together until I am as healthy as i can be. At which point i hope not to have to see a doctor except for a yearly physical, and when they finally toe-tag me.
I’m done. I want my LIFE back.
Sorry… It’s been a long 10 years. :)
I hope I answered the questions, if not, I’ll try again. Please forgive the verbosity, it’s an attempt to compensate for the residual cognitive struggles. Succinct is not my forte!
I get so tired of doctors,There suppose to help you but instead abuse you!I will never understand all my life that a doctor cant care less that his own patent is suffering.Instead of trying his best to find answers,He just lets you suffer for years.Then I find out his thoughts he tells me I have fm.Never allows me to have an mri that would have changed my intire life.Now all my crys about my neck and back were nothing to him.I finally go over his head and have a mri and find out hes wrong.My spine is so bad I will never be the same.Thanks to him its to late for me.I wonder when the next time will come that he throws a fast label around and doesn’t search into things.Dont let your doctors get away with bad care!All my life I will never forget the abuse he gave me when I went over his head.I let him go after 5 years of him not caring .Watch out for labels and insit on help.Go with your own feeling.its your body.
Hi Lisa – what a rotten life it seems you’ve had. So sorry to hear this.
To be clear, there are indeed many doctors who aren’t like that – some are members of our Society for Participatory Medicine.
Have you found a patient community online, with people like you?
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