I was misdiagnosed for over 4 years before I was told I had lupus. My reaction? “Thank God, what’s lupus?” That may seem weird but I was continually being told by GP’s there was nothing wrong with me and that it was all in my head. To finally have a doctor believe me and actually give me a definitive diagnosis was a relief, at least I then knew what I was up against. The shocking thing is that this isn’t uncommon, the current time from start of symptoms to diagnosis is estimated as 6 years.
In this scenario those of us that have a lupus diagnosis are the ‘lucky’ ones, I am constantly contacted by people who think they may have lupus but their doctors don’t believe them and I know how extremely frustrating that is.
It does seem strange in this day of information overload that it still takes an extraordinarily long time to get a diagnosis of certain conditions such as lupus. It is a very tricky disease to diagnose but certain symptoms do point towards the fact that someone may have lupus and that it should be investigated further. Lupus also mimics other illnesses with an overlap of symptoms, so it needs very thorough investigation to also rule out the other illnesses. For further information on why lupus gets misdiagnosed so much please see our previous blog.
I’ve said on numerous occasions it’s not always possible that a GP has the skills to diagnose lupus as even for a specialist it’s difficult and takes more time than a GP is likely to have available to them. They often just rely upon blood tests which may not tell the whole story. Anyone thinking they may have lupus should be referred to a rheumatologist who are the specialists in auto immune diseases. GP’s may not want to do that as there’s a cost involved but had I been referred much sooner a lot of time and money would have been saved on the constant GP appointments I was having, so it would have been worth it in the end.
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Our research on the diagnostic journey experience of 268 lupus patients across the UK showed the following:
Different types of misattribution by clinicians include:
“Nothing seriously wrong”: “Too many Drs told me there was nothing wrong with me and to go away and get on with my life.” (Participant-16, female, 40s).
“Medical mystery”: Clinicians told patients their symptoms were inexplicable or that it was too expensive to keep investigating. e.g. “They decided I had a totally novel disease.” (Participant-258, female, 40s)
Symptoms viewed in isolation: “I had classic lupus symptoms, but they were never put together.” (Participant-57, female, 40s).
Diagnostic roadblocks: Misdiagnoses - including mental health, psychosomatic, ME/chronic fatigue syndrome – which were hard for patients to challenge; eg “GP told me I was suffering with anxiety, when I went with swollen legs”
Moral misattributions: eg “I was treated like a liar or an attention-seeker by medics as a child.” (Participant-52, female, 40s).
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Why we don’t rely in blood tests alone
To clarify why we don’t rely on blood tests alone Professor D’Cruz has written the following information:
Diagnosing lupus
The diagnosis of lupus is based on an analysis of the symptoms supported by investigations including blood tests.
There are often delays in making a diagnosis of lupus. The symptoms are often non-specific and can be seen in other medical conditions. Lupus is not a common condition and health care practitioners may not think of the diagnosis
It is important that the clinician takes a comprehensive medical history and conducts a full clinical examination. It is helpful to tell the doctor about the symptoms. If lupus is suspected, blood tests can be helpful to support the diagnosis. Some tests are not specific such as low blood counts and raised inflammation markers.
The immune system in patients with lupus produces a number of antibodies. The most widely known is the antinuclear antibody or ANA test. Although this is not a specific test for lupus, 95% of patients are positive for ANA. Other tests such as antibodies to DNA are very specific for lupus but are not present in all patients with SLE. A protein in the immune system called complement is often low in SLE. Other antibodies including ENA antibodies may give more information about possible other clinical features of lupus. The so called ‘sticky blood’ antibodies, properly known as antiphospholipid antibodies may also be present. These antibodies can increase the risk of blood clots and problems in pregnancy.
Other tests may be needed. For example, if kidney disease is suspected, blood and urine tests may be helpful and a kidney biopsy may be needed. Likewise, skin biopsies may help to confirm a diagnosis of cutaneous lupus if the antibody tests are negative.
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Early diagnosis is the key to treating lupus, I was very lucky that it hadn’t done damage to my organs over the 4 years I wasn’t diagnosed. Even if it turns out not to be lupus you need to know what is making you ill, you shouldn’t be dismissed and shouldn’t be in pain with no answers as to what’s causing the problems. So my first piece of advice to anyone is to be persistent. Don’t be fobbed off by a GP not wanting to investigate further or by them dismissing lupus after just a blood test, in hindsight that’s exactly what I should have done. If I’d have even heard of lupus I would have asked for a referral to a rheumatologist and been an absolute pest as when I finally did see a rheumatologist within one appointment I had a diagnosis.
I’d say definitely do some of your own research, but be extremely careful where you get the information, ‘Dr Google’ can potentially be dangerous. As you know there’s a lot of absolute nonsense on the internet, be sure to use websites such as ours which are overseen by lupus specialists and the information is accurate.
Keep a list of every single symptom so that when you do get to see a rheumatologist they have all the information, that includes anything new that you think might not be lupus related as some symptoms aren’t as common as others or may indicate that you have another autoimmune disease. Does anything trigger the symptoms or make them worse or better? Do they come and go, if so how frequently? If you have any rashes etc take photographs. Do you have a family member with lupus or another autoimmune condition? If you do make a note of that too, auto immune conditions tend to run in families so this again may point to the fact you have lupus. As I mentioned, lupus is a tricky disease to diagnose, our specialists don’t rely upon blood tests alone and will look at your medical history as well, that’s where the information will be very useful to them.
If you still haven’t been diagnosed and want some advice please feel free to contact us.
Angie Davidson
The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice on a qualified physician. Find out more in our Terms of Use.
Updated May 2025
