As someone who has lupus and was misdiagnosed for over 4 years I understand the frustration people feel when they are unable to get answers. An average time from first symptoms to diagnosis is currently about 6 years which is pretty shocking.
Lupus is considered a systemic disease because it can affect just about every organ in your body. If the inflammation goes unchecked for a long time because you were misdiagnosed and not treated, you could experience organ damage and serious complications as a result. The consequences of a delayed diagnosis could therefore be very serious if lupus isn’t treated and isn’t controlled. So you can see that a prompt diagnosis is vital. Patients who experience mild symptoms are more likely to be misdiagnosed.
A Lupus Foundation of America study of over 3,000 adults with lupus found that 46.5 percent report being misdiagnosed with something other than lupus at the start of their journey with lupus. Additionally, more than half (54.1 percent) were told that there was nothing wrong with them or that their symptoms were psychological.
So what contributes to so much misdiagnosis of lupus?
Lack of awareness
The problem is there are so many diseases that lupus often gets overlooked and there’s a lack of awareness despite all Lupus charities worldwide doing their best to highlight it. It’s only when a celebrity such as Selena Gomez talks about having lupus that the media give any coverage at all.
If more people knew about lupus and its many symptoms they may recognise them sooner.
There’s no one definitive test
There’s no one definitive test for lupus unlike with other diseases, which makes it an extremely tricky disease to diagnose even for an expert. A doctor can’t run a simple blood test and come up with an immediate answer. I’ll come onto how lupus is actually diagnosed a bit later.
Symptoms are vague
Symptoms of lupus are vague and in my case appeared one at a time to start with. I was going to the doctor feeling tired, then depressed, then achy and so on. The GP was initially putting all of the symptoms down to me being female and decided it was hormone related, then later stress related. As the symptoms persisted and the list grew, but there was no physical manifestation of any kind, they decided that I should consider counselling, in other words it was all in my head and the symptoms were psychological.
The other issue is that symptoms wax and wane (come and go) so again that makes it difficult to find out what’s going on. If they disappear altogether for a long period of time you or your doctor may believe that it was a temporary issue such as a virus causing the problems. I always advise people to do things such as photograph any rashes as they never show up when you’re due to see a doctor and they may help with diagnosis.
Lupus mimics other illnesses
Lupus mimics other illnesses such as:
Rosacea and other skin rashes.
To make things even more complicated, it’s not at all unusual for a lupus patient to have other auto-immune diseases along with lupus, so they may also have one or more of the diseases that it mimics.
It can also happen in reverse where a patient is wrongly diagnosed with lupus, actress Portia de Rossi is a case in point, she talks about it in her autobiography Unbearable Lightness: A Story of Loss and Gain.
GP’s generally don’t have enough specialist knowledge to make a diagnosis
GP’s do a fantastic job but they usually do not have the specialist knowledge required to diagnose lupus, unless they have encountered it before or have a special interest in it. They will run blood tests, but unless something shows up there they will often dismiss lupus as a diagnosis. They can’t be expected to know everything about every illness and as they consider lupus to be a ‘rare’ disease they usually have very little awareness of it.
On top of this no two lupus patients are the same, we all have different symptoms, different severity etc, so it’s not something that a GP would immediately recognise. With an appointment being roughly 10 minutes long GP’s wouldn’t have the time to be able to undertake the long complex procedure of a full investigation.
In my case I was also seeing different GP’s, each was treating the individual symptoms and not realising that all the symptoms I was manifesting over time were related and classic lupus symptoms. These days that should be more apparent with computers, but the GP would have to check previous history of the patient to make the link.
What to do if you think you may have lupus
I get a lot of e-mails saying that people think they may have lupus, but aren’t being taken seriously by their GP and want to know what they can do. This is my general advice on what I personally would do, especially in hindsight and knowing what I know now, I’m sure taking these steps would have made my journey to diagnosis much shorter.
Firstly, as a starting point and it’s by no means definitive as there are a lot of lupus symptoms, check to see how many of the symptoms you have on the following list. Four or more symptoms point towards the fact you may have lupus and therefore you should pursue the matter further.
11 Criteria of Lupus
Malar rash – a butterfly shaped rash across cheeks and nose
Skin rash – raised red patches
Photosensitivity – unusually strong reaction to sun light, causing a rash or flare
Mouth or nose ulcers
Nonerosive arthritis – inflammation in two or more joints. Very common in lupus.
Cardio-pulmonary involvement – inflammation of the heart lining and/or lungs
Neurologic disorder – seizures and/or psychosis
Kidney disorder – increased protein or clumps of red cells in urine
Blood disorder – anemia caused by damaged red cells, low white cells or low platelet count
Immunological disorder – when your immune system attacks healthy cells
Antinuclear antibodies (ANA) – positive blood test not induced by drugs. If you test positive for ANA, your doctor may advise more-specific antibody testing
If you have 4 or more of the criteria the next step if to see your GP and ask to be referred to a Rheumatologist, who are the specialists in auto-immune disease and will be able to investigate further.
Rheumatologists have to be detectives, they will do blood tests but don’t rely on them alone and will also take a urine test, comprehensive medical history and carry out a physical examination. They will usually ask about the medical history of close family members too. When you see the Rheumatologist I would recommend that you take notes of your medical history; symptoms/hospital admissions etc and take any photo’s you have of rashes etc this will help assist them with the diagnosis.
This video is a doctors perspective on diagnosing lupus.
Lupus is not something you can ignore, it can become serious if left untreated so if you do think you may have it, particularly if there’s a history of lupus or other auto-immune diseases in your family, you should be seen by a rheumatologist who will be able to confirm it or rule it out. Don’t suffer in silence.
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.
