Diagnosis

Why Doctors Misdiagnose Lupus (& What You Can Do!)

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It’s common for clinicians to misdiagnose lupus or suggest that symptoms are a result of stress. In fact, 68% of Lupus Warriors report seeing 3 or more doctors before being diagnosed.

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.

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Why do doctors dismiss lupus?

There are many reasons why a doctor may misdiagnose lupus:

  1. Lupus and other autoimmune disease are relatively rare – the current statistic is 1 person out of every 200 people, or exactly half of 1%. This can be a particular problem 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.
  2. 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.
  3. Sometimes called the “great imitator,” lupus can look like many other conditions depending on its symptoms, including fibromyalgia, Sjogren’s syndrome, hypothyroidism, rheumatoid arthritis, bacterial infection, and many others. That it can occur alongside some of these other diseases confuses the diagnosis even further.
  4. Typical clinic visits are scheduled to ensure that doctors can 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.
  5. “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). But, with lupus to push beyond that assumption.

 

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.

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Is my doctor dismissive?

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.

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Am I dismissive of myself?

When you are sitting there in the exam room, half-naked on that tiny examination table, it’s easy to let them dismiss you. When you go to the doctor, you are vulnerable, in pain, sick, tired, and stressed. Hearing someone tell you that “you’re fine, you’re just stressed” can be tempting to accept. 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.

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How do I get lupus diagnosed?

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:

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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: For example, 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, and it is 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

You may be tempted to say “It’s nothing,” but you know, deep down, that it isn’t. 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 about how much work you do every day just to get by, or how difficult it can be to bend down in the shower. 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.

Comments (5)

5 thoughts on “Why Doctors Misdiagnose Lupus (& What You Can Do!)

  1. 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.

  2. 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

  3. 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!!

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