Lupus diagnosis: Carenity members tell their story

Survey carried out by Carenity among 125 respondents living with lupus in the UK and US.

2,6 years and on average 3 doctors consulted before getting a lupus diagnosis.

Carenity members living with lupus had to wait on average a little under 3 years to be diagnosed! The principal symptoms that alerted them to a problem were joint pain and heavy fatigue :

Fatigue| Joint Pain| Migraines | Rashes| Swollen Wrists & Hands| Blisters and redness| Fever

All of these symptoms had a significant effect on patient daily life. Most sited was fatigue and physical pain which weakened patients and complicated their daily routines.

Chronic Fatigue - 84%

Significant physical pain - 71%

Leisure and physical activities - 69%

Work-Life - 61%

Social life - 58%

Family life - 53%

Personal life - 48%

40% of respondents were misdiagnosed before learning they had lupus. Here are the principal illnesses they were misdiagnosed for:

Rheumatoid Arthritis| Lyme Disease | Fibromyalgia | Ankylosing Spondylitis | Arthritis| Depression | Stress| Multiple Sclerosis

"It started with a fever. My GP said it was the flu, then a lung infection and keep making me get lung x-rays every month... My blood work came back terrible, my pulmonologist thought it was an infected tooth, the doctor at the hospital at first believed it was an infection from the sterilization surgery I had done earlier, then they thought it might be an infection in my mouth." 

"Since they couldn't find anything at first, the rheumatologists said it was all in my head, and I was sent off to a psychiatrist who sent me right back to the rheumatologists, saying there's was nothing he could do about it..."

"My doctor was quick to refer me to a rheumatologist after she did a series of blood tests. The rheumatologist examined me and ordered more bloodwork. He ended up concluding that I was suffering from ankylosing spondylitis. He prescribed anti-inflammatories which really did a number on my stomach."

"At first, I couldn't understand why I was so tired, and the pain... I'm usually a hyperactive person, I've always been athletic and a hard worker, and suddenly I couldn't do anything... My GP told me I was depressed, then had to nerve to say I was spoiled, loved to whine, and all of it was in my head. I saw several other doctors, who told me I had a fragile constitution, but nothing to worry about, it was surely hereditary... "

A word from an expert: Laurent Chiche, member of Carenity's Scientific Committee and an internist

"Lupus can appear in patients of any age, but the majority of patients are pre-menopausal women aged 15 to 40. To diagnose lupus, there are indications, but they can be tricky to spot. Antinuclear antibodies are present in over 90% of lupus patients, but they're present in many patients suffering from other diseases as well; which contributes to misdiagnoses.

It should be noted that 10 to 30% of lupus patients also suffer from fibromyalgia which pops up, before, during or after their lupus appears. Thus, lupus is sometimes misdiagnosed as another associated auto-immune illness, since once a diagnosis is made, we check for the presence of other illnesses. In the same manner, some fibromyalgic patients suffer in pain for years and then develop lupus. They weren't misdiagnosed: it just wasn't necessarily lupus at the beginning.

Late diagnoses are sometimes due to the patient being given bad medical advice. There are doctors who specialise in this disease: internists. Patients often don't know this and they may not be referred to an internist because their symptoms are too vague, like joint pain. There are internists in every hospital."

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Before their diagnosis, only 29% of patients did research on the Internet to try and get an idea of what was wrong.

Getting diagnosed with a chronic illness can turn a patient's life upside down. At last, they understand why they've been so tired and in so much pain. The patient can put a name on their symptoms and their illness is recognised by health care professionals. Still, finding out that they have a serious illness can be a frightening experience for patients. For many of the lupus patients we interviewed, it was a shock…

It was a shock - 37%

It was a relief - 37%                                                                                                                

It was frightening - 29%

I wasn't shocked, I was expecting it - 20%

I felt nothing in particular - 10%

I don't remember - 6%

The role of the health care professional who announces the diagnosis is key. Sometimes, patients don't feel listened to or informed; others are very grateful to their doctors for having accompanied them in a difficult moment. For Carenity members living with lupus, most considered the health care professional more of an ally but complained about the lack of explanations from their doctor.

My doctor:

55% - took the time to explain everything
54% -  was very calm
40% - was empathetic 
16% - referred me for psychological support

My doctor:

16% - used complicated, scientific language
13% - sped through the diagnosis
11% - was cold and distant
10% - didn't seem to care

"They told me the name of what I had with no further explanation."

"You have a chronic condition, but nothing too serious if you follow your treatment. You're still young and we will be taking care of you from now on."

"On the telephone with my neurologist: "We found out what's wrong with you, disseminated lupus erythematosus. We can treat you in Dayton or Columbus, which one do you prefer?" and that was all! Absolutely zero information on this illness, or the impact it was going to have on my life."  

"They were rather direct and I was immediately referred for a coloscopy and other tests."

"My doctor told us the medical term and then explained it in a way we could understand, telling me that my immune system was attacking me instead of protecting me."

After the diagnosis, 47% of patients felt relieved to finally have a diagnosis. 29% were determined to fight the illness, and 11% felt confident about the future.

41% felt anguished, 32% lost, 18% angry, 17% desperate and 14% discouraged.

Feelings of loneliness also took their toll: 25% felt alone, 26% felt misunderstood by the people around them.

Thank you to all the members who agreed to participate! Our members took the time to share their diagnosis experience in order to help other patients get better care in the future.

« If a doctor doesn't know anything about lupus, they need to send us to a specialist who can explain the disease to us and take better care of us. »

« Absolutely must listen to the patient. Ask them if they have questions and tell them that even after they've been diagnosed, they can still contact the doctor (it's reassuring). Have a little empathy instead of trying to ignore our pain. »

« I wish they would have explained how to take care of myself better, a social worker to explain all our rights would have been great. I live in a rural area far from any hospital, I was never referred for psychological help since there are no psychologists around here. Everything's so far away. »

« My doctor was very professional, I could see the compassion in his eyes and he told me it wasn't a death sentence and it wasn't my fault. He explained things to me in a way I could understand. I wish I would have taken a friend or a family member with me for the results, just for some added support. It was a very painful and confusing moment for me. »

Do these results reflect your experiences? Share your experiences and questions in the comments below!