I am new here and am a writer working on a story where the central character learns she is sick and that she appears to show all the signs of a cancer - it will turn out to be misdiagnosed lupus.
I've joined the forum with kind permission of Paul Howard to seek feedback and experiences from members.
It matters to be that I tell an accurate and responsible story that helps promote an understanding of lupus, and to do this right and with sensitivity means careful research and listening to first-hand accounts.
Your kind help is hugely appreciated.
Written by
MoFanning
To view profiles and participate in discussions please or .
Have you googled the spoon theory? ..its a brilliant analogy of lupus.people think we look well but they dont see the fatigue ,the brain fog,the pain ,the rashes,the nights we cant sleep, the days all we do is sleep, the photosensitivty, the effects of steroids and immunosuppressants that mean we had to keep our distance before covid even existed.
Lupus can affect our lungs,heart,kidneys and brain too leaving us with permanent damage.
The number of times weve been told it's in our heads theres nothing wrong is endless
The number of AI illness that goes along side lupus is also endless.
We are so complicated some people inc hcps dont even try to understand what's it's like to live with lupus... .... many wouldnt last 5 mins in our shoes .I'm sure others will contribute more ...just thought I'd get the ball rolling .good luck with your research and book.SML xxx
Thanks so much. I've read quite a few interviews and 'diary' pieces and they all say this. I'm trying to educate about the condition within the context of a story and not to offer it as a lucky break if you'd thought you had cancer - for whatever reason the misdiagnosis might have happened. It's the need for a long lead to diagnosis that interests me most and the way doctors (naturally) tend to go down other paths all too often. I'm also interested in the way that when a biopsy is conducted, if a doctor identifies symptoms and suggests abnormal cells might mean one thing, that it tends to (subconsciously perhaps) influence what the lab technicians might look for and see - and lead to a misdiagnosis. Not sure I'm being clear with this. I'll get there though.
I'm really grateful for your help. I'm googling Spoon Theory now, it's incredibly useful reading for me.
There is also an 11 point criteria for lupus you may find helpful.im not sure I understand the might be cancer bit as often tests for lupus come back normal or negative suggesting nothing is wrong. It took 5 years for me to be diagnosed and I cant say I ever thought cancer neither was it suggested to me.sorry if Im misunderstanding you but when I think back to the days when I was stiff and struggling to get out of bed and get through a day I cant see it.I also have class v lupus nephritis which is diagnosed by biopsy and is the only way to get a definitive diagnosis. I think it's a lip biopsy for sjorgens. Kidneys remove antibodies in the blood so when there is excess antibodies it cant remove them and they get deposited in the kidney tissue causing the damage so they are a very good indicator of disease so not sure how much of a misdiagnosis you would get from those.🤷♀️ x
An admirable challenge you've set yourself here! But thank you for thinking of us lupus folk.
As Spaniellady says, definately Google the Spoon Theory. Another great resource to contact is Sara, @thelupustrainer (Instagram). She is a U.S. based very vocal advocate of the disease. Went from a hugely fit and successful personal trainer go having to adapt her life around lupus and fights very strongly for understanding and research fundraising for lupus.
It's not called The Great Imitator for nothing. You could pretty much throw any symptom at a person and it could be caused by lupus. All of us on here have such an array of symptoms. My consultant once told me that chasing what lupus will do to the body next is like chasing a poltergeist - you can't see it or predict its behaviour, and often just clear up the mess.
Another resource which explains just how varied and frustratingly bizarre the disease can be is the '90s TV show House. Although very dated now in its approach, again the sentiment of not knowing what it is / misdiagnosis/ what's causing the bizarre symptoms is there. The Dr basically treats unexplainable conditions and queries on most episodes that it could be lupus.
An experience you will hear from most of us on here is the length of time it takes to be diagnosed. Paul will have the average time (years), and the fight we go through to get it a diagnosis, keep it, and also continue to be heard and respected as our symptoms change, evolve, in any such way. It's a battle. And as one of the main symptoms in fatigue (this is NOT tiredness) and stress triggers flares this can be a vicious circle for our health.
I think 6 years is the average length of time to diagnosis. It would be alot less if 5 if those years werent spent telling us it's all in our heads ! 🤨 xx
Again, that's so useful to me. I'll take that contact tip. Hoping I can do you all proud with my approach. It's not a tragic book, it's a romantic comedy, so whilst being very approachable and accessible, it lets me deliver a far more serious subject into unsuspecting minds and grow awareness.
Oh I'm glad you've explained the writing genre!! Romantic comedy is a fabulous idea!! 💜Do u know about photosensitivity? The majority of us have to take measures in order to avoid UV rays as it makes us I'll!! We have to wear sunscreen ..hat..shades..cover up at all times!! For some like myself even indoor lighting can be very tricky..for instance I have to wear my wide brimmed hat to hospital appts coz the lighting makes me go very queer!! 😴😴😴😹
I'm a nightmare in a car too coz of the sun shining through the windows!!
If u would like to know more about photosensitivity..u can look at lupus UK website n there a link to Eclipse..there u will discover what kind of lengths we have to go to in order to stay protected from UV!! It's one of the most baffling symptoms..living a vampire like lifestyle!! 🧛🌈😽😽Xx
Before you knew you had lupus, how was it with the sun? Did it cause you discomfort, rash, reactions at all? My lead character is an older woman who is taking a cruise - under the impression she's seriously sick with limited time thanks to medical incompetence. It's at winter, but as she heads south, she'll be coming into the sun more. I thought if there might be anything I can know to add to authenticity that's a great help. I'm going to read around UV sensitivity now.
You're most welcome 🤗I was diagnosed with subacute cutaneous lupus in 2017.
In my youth I always had to be careful in the sunshine coz I'm fair skinned.
In 2013 I developed all over body rash that looked a bit similar to psoriasis. I ended up in hospital casualty dept n I became a bit of a celebrity!! The consultant in a&e told me that I had Steven Johnson's syndrome..a rare allergy to antibiotics!! All of the doctors n nurses in s&e that night must have come into my room to "have a look"!! 😹I felt like a freak!!
I spent four days in hospital n the dermatologist took a punch biopsy from my upper arm..he diagnosed me as having an allergy to flucloxacillin which I was taking at the time.
Now years later it's thought by my rheumatologist that it was probably lupus!!
As an aside I've just had a another thought 💡 when I was in hospital I was introduced to steroids for the first time!! Oh my!! They r tiny pills but the side effects r pretty hard to handle..feeling angry for no real reason..eating everything in site..insomnia..tearfulness!! So check that out if u want coz lots of us..myself included r on long term steroid treatment!!
One more thing with the photosensitivity..your lady is going on a cruise..UV rays reflect off of water..n snow..n pavements..any reflective surface basically!! One of our members got sunburn under her chin caused by standing by her car for 10minutes!! The sun was shining off the roof!! 🌈😽😽Xx
My character is 67, she's been feeling under the weather for a while, and absolutely dog tired, sluggish and like she must be coming down with something for months, yet she shakes it off as she has a job to do and lives alone. It's as she comes up to retirement that her illness finally gets taken seriously and she's told it may shorten life expectancy, hence why she needs to do things, despite her body being so tired and leaden and the feeling like she has no spoons left.
Oh so a kind of bucket list..always wanted to take a cruise..that kinda thing? The age is good too coz many of us ladies n most of us r ladies coz lupus affects women 9-1..lots of symptoms can be passed off as menopausal n general aging!! I was diagnosed in the peri-menopause after having had a career, children n living a relatively healthy life.
Best of luck with it..I do hope she finds romance 💜🌈😽😽xx
I can't give too much away - because I'm still in the research and planning stage, but it has to have a happy ending, or why else write a book (in my simple world)?
Hi Mo, I never got tan in the sun as a child or adult. I did get severe headaches, felt ill and got red-faced that disappeared. People used to ask me if I never went outside. Then later in life, went to Florida and almost passed out in the street, but just thought it was too much heat and sun. Then the same thing happened on a vacation in Toronto, Canada the next year. There were more episodes of not being able to tolerate the sun.I didn't tell the doctors and though I had some symptoms that related to Lupus, I had never heard of lupus and just thought the symptoms were from getting older, trying to do too much, etc. Then, eventually, I got really sick and had the butterfly malar rash, lost a lot of weight, night sweats, pain, etc. that led to a diagnosis. I also had a major allery to sulfa which was another major clue. Often it takes a doctor to be a detective to look beyond. I was fortunate as once I became so ill, it only took 4 months to find out what was wrong although those were really scary months.
Good luck on your book. I like the comedy aspect. One thing I know is that my quirky sense of humor is what helps me get through.
Thinking back to that time when you were waiting for your diagnosis (and thank every God going it was just four months). I realise it must have been so scary not knowing what you might have. What did you think it might be, or what did people suggest (everyone has a theory about everything these days). I'm veering the story away from a cancer diagnosis and into pure lupus diagnosis, but having it unclear as the story starts and results coming through midway into the story as she battles the symptoms so many of the wonderful people here have shared.
Mo Fanning, At the time the doctors I was seeing kept saying it was a virus. I saw 2 dermatologists that missed the butterfly malar rash and kept giving me ointments for the rash. They never did a biopsy. Then the 2 GPs I was seeing gave me sulfa and I had a dangerous reaction and looked like a burn victim. Sulfa is a problem for some people with lupus, but they still had no clue. The rash was in the bloodstream and would reappear for months, just not as bad. At this point, I was frightened and felt like giving up on doctors. I read symptoms in a book about diagnoses and lupus came up, but I knew nothing about it at the time. I was a teacher at the time and a colleague said I should go to his doctor as he was great at diagnosing. I did and he took one look at me and starting asking questions. He said he would do bloodwork and thought it was either lupus or a strep infection throughout my whole body. The tests came back for lupus. I have always felt he saved my life and sanity.
Apricot100, Love your comment about The Great Imitator as that was what I was told by the doctor who first diagnosed me and then chasing the poltergists.
I wanted to drop in and update that I am almost done with the final draft and it's out to editing. I've varied the storyline a fair bit based on what you've all so kindly told me here. She's very much at the start of this journey with lupus and happens to have the luck of a doctor who has worked with it before, the symptoms are starting to dog her days, but there are good days too. I'm hoping the symptoms and explanations I've fed in help with some general awareness and once again, thanks to everyone who helped. I wish you all well.
Oh gosh! Photosensitivity is the worst 😫 I was a teacher and I xould not stand the sun. Almost passing out while doing PE. It would make me so sick I'd vomit. Finally found out that the sun causes inflammation. Chest pain is also very common and I'm remembering now how I would randomly fall over my learners desks while teaching🥴 and make it out to be a joke, because they were little and I didn't want to scare them. People thinking that you're menopausal because you have night sweats even after having tested if you are. People thinking that you're faking it cause you look fine. Dr's ignoring the rashes. I was told for 2 years that I have the flu...long flu I guess.... my earliest symptoms were that my feet and legs would go tingly and numb and / or would pain like nothing. I'd often wonder if I'd be able to walk the next day when I got into bed. The fatigue was next level, but I put it down to being overworked as that was what others told me. Dr's told me that I was stressed and that it was all in my head. Even family members thought I was looking for attention...not my husband, kids and parents though..thank God. One moment I'd be fine, the next hubby would have to pick me up from the floor soaked in sweat and losing control of my bowels and vomiting 🤢 simultaneously. Stiff body every morning. Joint pain so bad I was in tears. Once a rheumatologist told my hubby there's nothing wrong with me, that I need therapy, I nearly slapped him, I was angry and devastated. Finally after 2 years I found a GP who listened. She sent me to a gastroenterologist who found a yeast infection in my throat, who cured that but found it strange, who cleared it up but I was still in pain and then I ended up with a physician who did bloods and then the diagnosis. The depression, fear and anxiety that you experience is indescribable. Many days and nights I'd be in excruciating pain and just tell God to take me, because it was all too much.
I learned that we have to be our own advocates and knew long before I was diagnosed that it was lupus. They say don't trust Dr Google, but I learned and researched a lot. Spoke to a friend who has MS because we have similar symptoms. Turns out I have CNS lupus, which was a blow because going crazy scared me. It now looks like I've developed discoid lupus as well because my skin is developing dark rashes . I'll see my Dr in April to find out what that's all about. My feet are always cold so that could be Reynards or a form vasculitis . That too needs to be figured out.
Long post, I'm sorry, but I'm hoping that it helps with your book. We need people to shed more light on this great imitator 💜
MoFanning, welcome! Thank you for taking on the task of raising awareness about this rollercoaster disease!
Honestly, I’m not sure about making the leap from cancer to lupus, as the symptoms for both can be vastly different. I’m not sure how you would get the two confused. Both cancer and lupus are autoimmune diseases, but from my (very limited) knowledge, cancers tend to cause specific kinds of worrying symptoms that you tend not to get with lupus. My lupus has imitated lots of other sicknesses—everything from stress to chillblains to a heart attack—but has never mimicked cancer. (At one point, they thought I had a tumour, but the scan came back negative. Those uber scans tend to put cancer-related fears to rest pretty quickly.)
Have you considered confusing lupus with another ailment, say, heart disease, or psychosis, or epilepsy, or something? Those things have clear overlapping symptoms with lupus, and it would be very easy (and quite probable) for doctors to misdiagnose lupus in those situations. Many of us could tell you stories of our misdiagnoses, if you’re interested!
The other thing worth mentioning is that no two lupies are alike. It’s not like the flu, where you have a list of seven common symptoms, and most people tend to get most of them. Lupus can vary hugely from person to person. Even though there are 11 diagnostic criteria for lupus, there are many other symptoms that can and do occur with lupus that are not included in that criteria. So the 11 criteria give you a very incomplete picture of lupus.
As an example, one person with lupus may have rashes and joint pain. The next person might have heart issues and a blood disorder. The next person might have kidney and liver involvement. Yet another person may have lung disease and breathing problems, and yet another might have seizures and gut issues. Most of them will probably have fatigue and brain fog, and they may have many other symptoms too. I have had everything from split nails to pericarditis.
I say this in order to say the following: beware of depicting your character as a ‘typical’ example of lupus. There’s no such thing. It might be an idea to have a support group in your story, or some other device, whereby you can explain that every lupie is different. Or maybe you can come up with something more creative! Hope this helps!
Thanks, but things moved on a huge way from when I started thanks to advice from here. There's no cancer confusion and it's newly suspected by a doc, not even formally diagnosed at this point. The story is over the holiday season so she's due in for formal tests after the book ends.
How interesting to know the story has ‘moved on’ as you say! It sounds like you are more concrete on the plot direction now, I would love to hear how the story pans out. All the best with the writing!
I figured it might be of interest if I include the first chat with her regular doctor about lupus ... and hopefully some of the many kind folk who gave me input and advice will pick out their brilliant words.
------
Malinowski holds a sheet of paper that confirms the shape of the rest of her life. He has the power to knock her for six with one simple word. The same word he used five years before: Cancer. She’s been waiting for this moment for three long days. Now all she wants to do is thank him and leave. She’s not above sticking her fingers in her ears and singing la-la.
Anything to delay his verdict.
“Has it returned?” she says, and her tongue sticks to the roof of her mouth.
“Your levels are near perfect for a normal, healthy woman of your age.”
Even though it’s good news, the phrase ‘a woman of your age’ sets her on edge. A guy with mustard down his shirt used it just the other day at the diner, after pointing out to his sweaty buddies how she still had great legs, turning her into a something rather than a someone, and even though her heart should be all for singing, Malinowski’s diagnosis fails to settle her fears. She doesn’t want to argue with a man she trusts, but what if the blood samples got mixed up? They must do hundreds each day, and sticky labels come loose, a junior lab technician might think he has her blood, but in fact it’s from an Olympic athlete, who at this very moment is hearing he or she is dying. How else does Malinowski explain the way she feels like her body got pumped full of lead? How come it’s a struggle to open her eyes each morning? Why did she miss her stop after falling asleep on the A Train?
“Things just aren’t right,” she says. “When I woke today, I could barely kick the covers off my feet.”
The doctor perches on the edge of his desk, and his pale blue eyes twinkle. Ellen can imagine he was quite the catch at high school.
“Have you heard of lupus?” he says, and she shrugs.
She may have heard the word, or read it in the New York Times, but lupus sounds like one of those ancient diseases long since wiped out. Like smallpox or the black death.
“Should I have?” she says.
He grins. “I guess not. But you know what I mean if I talk about autoimmune diseases?”
Ellen nods. She half-watched a PBS documentary where a young, handsome medic explained how hard they are to diagnose. Every ten minutes, a warning flashed on screen to remind viewers the broadcast was general in nature and no substitute for advice from a qualified health provider.
“Everyone has a part of their body we call their immune system,” Malinowski says. “It’s there to help fight off disease. In some people, the immune system stops fighting and starts attacking.”
“But this lupus isn’t cancer?” She tries to stay hopeful. “You know how to fix me?”
He exhales. “Working out what lupus might do to a body is like chasing a poltergeist. You can’t see or predict its next move. Most of the time, we doctors get called in after the fact … to clear up the mess. No two cases are alike. It’s not like the flu where I can tick off symptoms.”
There’s a faint roar somewhere in the back of Ellen’s head. One she’s heard before and one she hoped would never again come visiting. She takes a breath.
“When you say clear up the mess,” she says. “That sounds a lot like cancer.”
Malinowski’s expression is kind. “I’ve heard it called the great imitator. You could throw most any symptom at a person and it could be caused by lupus. I want to refer you to a rheumatologist. When the holidays are over, I’ll get you in with a guy I know.”
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
could somebody help me recognise the symtoms of lupus
Being tested for Lupus help
Lupus and hairloss please help
Help with understanding bloods
Lupus don't understand this disease
