All types of lupus including systemic lupus erythematosus (SLE), cutaneous lupus (CLE), and lupus nephritis (LN) are affected by stress. Stress is a lupus trigger. It exacerbates lupus symptoms, and it can be a symptom of lupus itself.
But, there is more to lupus than stress. Skin rashes, lesions, fatigue, pain, and more comprise an ever-shifting symptom tapestry. Unfortunately, by the time you get in to see a rheumatologist, it’s common for the symptom you were concerned about to have faded. Without current and obvious symptoms, many patients report that their doctor dismisses their concerns and fails to offer advice or treatment.
This narrative of being dismissed by a clinician is part of many Lupus Warrior’s stories. It can be a battle to be believed — by doctors, by family, and by friends.
Why do doctors dismiss lupus?
There are many reasons why a doctor may misdiagnose lupus:
- Lupus and other autoimmune disease are relatively rare.
- 1 person out of every 200 people have lupus. This makes diagnosis particularly challenging in rural settings where a clinician may have had limited experience with lupus.
- Many disease activity scales rely on physician assessments. So, when a clinician has little to no experience with lupus outside of a textbook, it can make lupus management more difficult.
- No two cases of lupus are exactly the same. People experience different symptoms, ranges of severity, organ involvement, and physiological responses to stress. This makes it difficult to recognize.
- Sometimes called the “great imitator,” lupus can look like many other conditions depending on its symptoms. It often appears with symptoms similar to fibromyalgia, Sjogren’s syndrome, hypothyroidism, rheumatoid arthritis, bacterial infection, and others.
- Not only that, it can occur alongside some of these other diseases confuses the diagnosis even further.
- Doctors’ schedules are designed so they see as many patients as possible each day. This format of many short visits functions in many instances, but it is problematic when diagnosing lupus. Doctors need to evaluate trends in patient-reported symptoms, family history, and lab data.
- “If you hear hoofbeats, think horses — not zebras.” This refrain reminds doctors to look for more common problems before considering a rare diagnosis. This is something they are trained to do, and ensures that they don’t put their patients at risk — health, emotion, and finance-wise — for unnecessary treatments. However, it also means that they prioritize common health issues based on their observations of your body weight, race/ethnicity, age, stress or lifestyle factors (and so on).
The shifting culture of healthcare
Even when they dismiss you, Doctors don’t aim to be malicious — though their words, tone, and gestures can hurt. While some doctors may act surly, rude, or condescending, doctors are also under a lot of stress in their job. Many practitioners are sleep deprived. Many experience trauma from their work. They have also been trained to trust their own observations over that of others — especially that of patients. As we become more aware of these issues, the culture of healthcare is changing.
In the meantime, you should forgive your doctor for their flaws but also stand up to them. You can push some doctors to continue the diagnostic process if you are persistent. When opening a dialog with them, it’s important to recognize when the clinician you are speaking with is closed off to your voice. These doctors may not be able to listen to you, and a different doctor might be your best bet.
Is my doctor dismissing me?
How can you recognize when you are being dismissed out of hand?
You can watch for eye contact and listening behavior during the initial parts of the session. If your doctor listens to you and asks questions, then they will be more open to your input than a doctor that glowers at their computer screen and clicks the boxes off mechanically. (And some docs can also be frustrated by the computer system, too!)
Standing up to a doctor’s assessment of “just” stress and telling them why you think that the problem may be deeper can also reveal a lot. Their reactions may vary, from a blank expression to active listening, to an outright eye roll.
Their tone of voice can also give you several clues. If your doctor is talking to you bluntly or abruptly, has a condescending tone (as if talking to a child,) speaks slowly (as if talking to someone having trouble understanding), or an annoyed tone (as if talking to someone who is ‘wasting their time’) then they are dismissing you. If they are talking to you respectfully, then you will likely have better luck.
Am I being dismissive of myself?
It’s easy to let yourself be dismissed when you are sitting there in the exam room, half-naked on that tiny examination table. When you go to the doctor, you are vulnerable, in pain, sick, tired, and stressed. It’s tempting to accept that “you’re fine — you’re just stressed.” Add to this the fact that women (who are more likely to have lupus than men) are also more likely to downplay or wave-off their symptoms, and you have a recipe for ignoring what your body is telling you. It’s easier to deal with “just stress.”
If you believe that you are experiencing something more severe, don’t give in. Your symptoms are valid, and you have a right to have your health treated and your voice listened to.
So, how can I figure out if I’m battling lupus?
So how do you do it? When working with a dismissive doctor, sometimes the best recourse is to find another doctor or to get a second opinion. Even if your doctor is open to your input, they may take some convincing. Read more here about how lupus is diagnosed.
Here’s how you can stand up for your health and convince them to do the tests or treatments that they need to do:
Record your symptoms
Keeping records of your symptoms — how they feel, how bad they feel, where you felt them, and so on can help you track patterns in your symptoms. Showing a pattern is a great way to tell doctors that there is something more solid than stress here. In particular, watch and record any joint pain, brain fog, mouth ulcers, and skin lesions as these are the most common symptoms of lupus, but also keep track of any other symptoms that you want to bring to your doctor.
You could even check out the LupusCorner app on iOS and Android
Be descriptive
It can be difficult for doctors to match a patient’s feelings to a condition. People feel things differently. The more descriptive you are, the more that a doctor can glean from your symptoms.
This can mean getting creative with your analogies. If you have periodic fatigue spells where your body feels like it’s a construct made of stiff, cold iron with unlubricated joints and a low battery that goes to zero the moment that you think about getting out of bed… tell them that.
It can make them relate to you and your struggle, which can shake them out of their dismissal. Other doctors don’t do well with a creative analogy. They don’t expect medical terminology — and may even become more dismissive of you for it. But, if you tell them that you regularly have a headache that feels like a constantly increasing pressure against the back of your skull that eventually becomes so painful that it is blinding and lasts for hours on end, then they may be more likely to pay attention.
Bring a buddy
Being alone in an exam room can be stressful. It’s easy to cave in and shut down under pressure from the doctor. This is especially true if you are fatigued, are in the middle of a spell of brain fog, have social anxiety issues, or feel ignored. This is where a friend comes in. Bring someone who can advocate for you and your symptoms, who can back you up when you feel beaten down, and can ask the questions that you can’t remember in-the-moment. Having someone else verify your symptoms — or even keep track of them — can be very convincing to doctors, and if the doctor is not listening to them, they may have the “spoons” to stand up and take you elsewhere.
Lupus.org and this website have a few more tips that might help you prepare.
Be blunt
Listen to your instincts, and tell your doctor what is happening straight out. If you hurt, you hurt. If you feel stressed, you feel stressed. At the doctor’s office, you don’t need to be modest or sugarcoat the challenges you are having. You can be grateful for the good days, or for the life you have. But in the doctor’s office is the time to tell them that you need help.
Be persistent
Even if your other strategies aren’t getting through, be persistent. Don’t worry about annoying them — if the doctor orders the ANA blood test that you need because you or your friend badgered them into doing it, it might not be the ideal situation, but in the end, you are doing what is right for you.
27 thoughts on “Why Doctors Misdiagnose Lupus (& What You Can Do!)”
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I’m sorry but I have to disagree about the ANA test, I always know when the Lupus is flaring and my ANA tests are always higher than previously ‘normal’.
This was the first test I had back when I was diagnosed at 23, I’m now 61, I believe they’re an expensive test and feel this is the reason Dr’s hestitate.
I also the have a range of other tests as well every time.
Believe me when I say I can’t can’t count how many other Autoimmune Disorders I’ve been ‘Diagnosed?’ with.
We more than anyone know our bodies and when there’s a problem.
Thank you for your contribution. It was very helpful.
I have serious problems and more than likely autoimmune diseases but no one can help me. I’m exhausted trying to find a dr who will listen and do something til they find out what’s wrong with me. I just might have lupus with other one’s as well it just spiraled out of control because no one listened.
I have serious problems and more than likely autoimmune diseases but no one can help me. I’m exhausted trying to find a dr who will listen and do something til they find out what’s wrong with me. I just might have lupus with other one’s as well it just spiraled out of control because no one listened.
Last week an Endocrinology doc said she didn’t understand my diagnosis of Lupus “because Lupus usually attacks internal organs”. Thank God that hasn’t happened yet but no-one has been able to tell me why I have 5 known places in my body of AVN (dying of bone), escalating numbers of UTI’s (4 different bacteria), muscle weakness in legs to the point I now need a cane & sometimes am unable to walk. I have all Dx’s in above #3 & more yet these docs have no answers but tell me I should not take so many antibiotics for UTI. Normal Rheum Factor is 0-35 mine is 264, antibodies very high also, no answers. I am tired of being treated like a hypochondriac. My Mother was treated the same before she died of ALS & my eldest Sister who died from complications to end stage renal failure (also w/Lupus). Lupus warriors are neither seen or heard by the medical community. Full Stop
Hi!! But i just wanted to say that was awesome! Literally thats how they treat me like a hypochondriac! I know what’s going on with my body i know waking up feeling like i have the flu every day of my life is the worst! Im so tired of feeling like this but most of all tired of not gett nowhere with these Doctors its all about the money and pharmaceutical companies!!!
I agree with everything you said. I tested positive for lupus in 2018 . And my mom died from it. I went to a rheumatologist he said it was all in my head. I got no treatment. The symptoms. I have are fatigue, rashes low-grade fevers.. hair loss low vitamin D, low potassium . Joint pain ulcers in my nose in my mouth.. headaches pains in my chest. In my medical records, it said I had Sjogren’s. I been going to doctor to doctor to get help. They say it all in my head. My mom mother died from rheumatoid arthritis. So how do I Moon diseases run in the family. I am sick of feeling like I have the flu.. the doctor said I have the markers for it but I don’t have it. They’re not going on my symptoms are in my family history.. both my grandma and mother did not get treatment for their autoimmune diseases and died. So now I’m gonna be the third generation to die of those diseases and not have treatment myself.. I think this is wrong that this happens to us we should have a right to be hurt when we are sick. I think things need to change in the medical community.. I think God that it hasn’t went into my kidneys yet. Or any other organs. Another thing I don’t like is the brain fog and short term memory loss. For me, the true heroes were my grandma and my mother and everybody else that has had any autoimmune diseases.. Anna on treatment, or fighting to get that diagnosis, for you are truly my heroes. I pray that there is a cure one day, so no one else’s stuff for her die from these dreaded diseases,
I agree with everything you said. I tested positive for lupus in 2018 . And my mom died from it. I went to a rheumatologist he said it was all in my head. I got no treatment. The symptoms. I have are fatigue, rashes low-grade fevers.. hair loss low vitamin D, low potassium . Joint pain ulcers in my nose in my mouth.. headaches pains in my chest. In my medical records, it said I had Sjogren’s. I been going to doctor to doctor to get help. They say it all in my head. My mom mother died from rheumatoid arthritis. So how do I Moon diseases run in the family. I am sick of feeling like I have the flu.. the doctor said I have the markers for it but I don’t have it. They’re not going on my symptoms are in my family history.. both my grandma and mother did not get treatment for their autoimmune diseases and died. So now I’m gonna be the third generation to die of those diseases and not have treatment myself.. I think this is wrong that this happens to us we should have a right to be hurt when we are sick. I think things need to change in the medical community.. I think God that it hasn’t went into my kidneys yet. Or any other organs. Another thing I don’t like is the brain fog and short term memory loss. For me, the true heroes were my grandma and my mother and everybody else that has had any autoimmune diseases.. Anna on treatment, or fighting to get that diagnosis, for you are truly my heroes. I pray that there is a cure one day, so no one else’s stuff for her die from these dreaded diseases,
????????????THANKS
Thanks for reading! 🙂
Hi I am a Registered Nurse and Midwife and have been very sick these past five years with 8-9 symptoms of lupus, I’ve had to reduce my hours of work due to these symptoms. In particular I tore a tendon and ligament in my right foot, I now have a meninioma in a critical location in my brain and have had chronic nephritis for the past 4 months with high proteinuria. But because none of my blood tests confirm lupus I’m getting brushed off by Drs. My grandmother died from pleurisy which quickly escalated to renal failure then 3 cardiac arrests on the final morning. On autopsy the Drs said
she had an inflamed pericardium? My neurologist yesterday said all my symptoms suggest lupus and she mentioned zero negative lupus. Does anyone know anything about this??? Desperate!
I too have had a very difficult time getting straight answers about my Lupus diagnosis. I have all the symptoms and have had 2 out of 3 positive ANA tests but my Dr. still is hesitant to give me a definate diagnosis. I have been diagnosed with Sjorgrens and fibromyalgia, Raynauds and RA. It has been very frustrating to say the least. My family don’t seem to grasp the hardship of this disease. Dealing with the physical issues of these diseases is one of the hardest things I’ve had to deal with but feeling completely alone and misunderstood had been just as hard! I know there are others out there dealing with the same or even worse so its difficult for me to voice my pain and fatigue as well as other symptoms. This is my first post. I hope that I can find support and understanding from MYLUPUS team!!
Reading these comments are heartbreaking because I am in the exact same place right now. My Dad died because of Lupus after being misdiagnosed and dismissed. Big inquest to hold people accountable and they *lost* his notes. Case closed no one held accountable and me without a Dad. FAST forward to me having every symptom and repeat Doctors appointments. They lose my notes also and have incorrectly logged crucial information. Currently 25, complete hairloss so I’m now bald, extreme Swelling, fatigue, pain etc. And still being ignored with no diagnoses. I am so sorry we are going through this.
I just stumbled upon this site and it is so helpful to read what people share…it helps me to know I’m not alone.
Reading this is reassuring when you have so many symptoms, are in tears from the pain, can’t go in the sun; but the doctor charts you as possible anxiety. The only time they drew an ANA was during diagnosis of pleurisy (which I have read studies that explain pleurial fluid can pull antinuclear antibodies from blood serum and into pleurial areas instead). The butterfly rash, extreme fatigue, recurrent UTI’s (3 in 1.5 months despite antibiotics for ecoli also), puffy feet at the end of the day, high blood pressure, tachycardia, migraines, a headache for 2 months, mother has Ms, Aunt has Lupus, grandfather has RA….. Just because my labs at the first ER visit for pleuritis showed ANA negative and CBC was “OK” (ignore neutrophils high and Lymphocytes low), UTI, BP, high resting heart rate, three doctors have dismissed the whole picture.
It’s good to hear that this long road is not such a lonely one.
Everything you’ve said is exactly like my story. ER for pluerisy. Neuropathy in my hands and feet. Toes and fingers turning blue. Butterfly and disc rashes. Constant migraines, lymphocytes low been tested for ANA multiple times and it’s always negative. I also have family history of lupus but I’ve been told every time I don’t have lupus.
Yes this is exactly what I am dealing with doctors will not even believe anything seems they just want me to die .
Is so hard to know I have several autoimmune diseases lupus just happens to be one of them dealing with this for over 40 years doctors are so rude they just treat me like they think I am mentally ill this disease attacks all my organs including my brain when it wants to for as long as it wants to so far no D X I am now 61 doctors want to chase every rabbit down every rabbit hole and never get to the obvious source seems they just want me to die ☹️
IN March of 2019 My blood work came back ANA POSITIVE AND positive for RNP antibodies. I had been having flares for about 3 years with negative blood work. By the time I got in to see the Rheumatologist which was about 12 weeks, my blood work was within normal ranges. I’m now being watched for CREST. Their solution to my fatigue was wanting to do a sleep study. And the solution to the pain was to keep doing exactly what I am doing. Alternating between ibuprofen and acetaminophen . I just started an flare, but I just went to my primary care instead. She doesn’t make me feel like it’s all in my head. Plus my copay for her is 30.00. My rheumatologist visits run 376.00.
I was diagnosed with Lupus over 7 years ago by an RA and now I have all new doctors and the RA all of a suddenly doesn’t think I have Lupus. I got an earful that I don’t “look” like I have it, that I “have” Bursitis and I am overweight. That my rash on my face is acne (I am 49 and haven’t had acne since I was 17). Then he suggested something else. I felt degraded, dismissed and totally ignored.
Get another doctor. He can sit on his high horse but that doesn’t help you. You take care of yourself and never let anyone degrade you or make you feel ignorant. He is there to help you not the other way around. Dont give him another oz. Of your time. Chin up and onto the next dr who will listen and most of all respect you!
I feel like Lupus is what I am dealing with! I have the “butterfly rash” on my face, mouth ulcers all inside my mouth, headache, joint pain and swelling, swollen puffy feet, raynaud’s in my hands and feet, HORRIBLE fatigue, brain fog, positive ANA, Positive Anti-dsDNA Antibody, and I still can not get my Rheumatologist to listen to me!!! I cry because I am so frustrated, but I am just not sure what to do at this point!
Wish I could get answers to my problems they are just getting worse and I feel like I have several autoimmune disorders including lupus and hands and feet are tingling and becoming numb and I feel like I will be paralyzed if I don’t get a diagnosis soon. I have so many more symptoms but too tired to text them all. I feel like I’m dying literally every single night and day and so tired of Drs and no one listening it’s horrible. We need real physicians who listen and care.
my family has lupus in it. I have friends that have lupus and that are nurses. My daughter is not being diagnosed with lupus because she is too young. She has all of the symptoms. She gets the flares the rashes the skin peeling. Tired all of the time. Cries because of pain in joints and from the skin issues. I took to the doctor again today and he said yes it looks like it but we do not like diagnosing it. I have spent of $2000 with insurance and not only am I losing all of my money but my daughter is suffering and crying. Where do you turn to when it is obvious but no one will help?
i am new to lupus and have not been diagnosed, only recently have i been exposed to the idea of having it to my doctor in the ER. My grandmother has lupus and my first cousin has an undiagnosed autoimmune disease. My mother was diagnosed withRA but I think it was incorrect, she died of a heart attack at 49. I have been experiencing many lupus symptoms, like the butterfly rash i thought was sunburn. Painful joints to the point of steroidal injections and feeling like i have the flu but no one else in the house contracting my sickness. I am constantly fatigued and can sleep easily 16 hours a day. I am only 24yo, but this battle is far from over. 6 surgeries in 3 years to try to find answers and yet all inconclusive.
OMG I can so relate
3 positive ANAs, 1 positive double stranded DNA, low platelets for over 25 years, myalgia, joint swelling, redness to the point where I could not put weight on that foot. Steroids to calm the swelling and pain. I don’t have full range of motion on my right arm/shoulder. Extreme fatigue, insomnia. Yet the rheumatologist will not call this lupus.
3 positive ANAs, 1 positive double stranded DNA, low platelets for over 25 years, myalgia, joint swelling, redness to the point where I could not put weight on that foot. Steroids to calm the swelling and pain. I don’t have full range of motion on my right arm/shoulder. Extreme fatigue, insomnia. Yet the rheumatologist will not call this lupus.