A research team from Cambridge University has found that having a psychosomatic misdiagnosis (a misdiagnosis of a condition where physical symptoms are caused or worsened by psychological factors) before getting an autoimmune diagnosis can have a long-term impact on a person’s mental health, self-esteem, and their trust in healthcare professionals more generally. They have recommended that people with a previous misdiagnosis need more support, and that healthcare professionals need to recognise and openly discuss previous misdiagnoses with their patients to offer support and help reduce any lasting negative impact.
Background
It can take people a long time to get diagnosed with conditions like lupus, for lots of different reasons including symptoms being similar to other conditions, no specific tests, and poor knowledge of lupus (see our diagnosis page for more information). Sometimes, people are misdiagnosed with a different condition at first. These misdiagnoses can be other physical conditions (“somatic”) or a condition where physical symptoms are caused or worsened by psychological factors (“psychosomatic”). For example, for people with lupus, a physical health misdiagnosis might be anti-phospholipid syndrome (APS), and a psychosomatic misdiagnosis might be anxiety. It is not a misdiagnosis if a person does also have the other condition, for example someone might have both lupus and anxiety or APS.
What was this study trying to find out?
There’s lots of research which investigates the impact delays in diagnosis can have on a person’s physical health, for example that their disease progresses while it was not diagnosed or treated. This study was investigating whether having a misdiagnosis of a psychosomatic condition had any long-term impact on the person’s mental health or relationships with their healthcare team.
What did this study do?
This research team have previously done studies investigating “neuropsychiatric symptoms”, which are symptoms that involve the brain, the nervous system, or mental health. In their previous work, they have done surveys of people with systemic autoimmune rheumatic diseases (SARDs), which includes people with lupus. Those surveys included questions related to misdiagnosis, so they used information from the surveys, and also interviewed patients and healthcare professionals to explore some of the ideas in more depth. They compared the findings for misdiagnosis of physical and psychosomatic conditions, to try to work out if the results were because of the type of misdiagnosis, or if it was due to having any type of misdiagnosis.
What did they find out?
There were three main themes of results:
- Impact on medical relationships
People with a psychosomatic misdiagnosis were less likely to feel they could trust their healthcare team, than people with a physical health misdiagnosis. This lack of trust expanded to other healthcare professionals, not just the person who misdiagnosed them.
- Impact on healthcare behaviours
People with a psychosomatic misdiagnosis were more like to try to manage symptoms themselves and not report all their symptoms, than people with a physical health misdiagnosis. People with any kind of misdiagnosis said they rarely over-played their symptoms when talking to their current doctor. But healthcare professionals said they felt that having been previously misdiagnosed could often make people more anxious. They said this anxiety then caused people to either be reluctant to share symptoms after having been told they weren’t relevant during their misdiagnosis, or they shared too much and thought everything was related to their condition because they didn’t have trust after being told ‘nothing is wrong’ when they actually did have an autoimmune condition.
- Impact on mental wellbeing
There were lots of ways that having a misdiagnosis had an impact on people’s mental health:
- Around 7 in 10 (72%) of people who’d had a misdiagnosis in the past, said it still upset them and had an impact on them, even if their misdiagnosis was many years ago.
- When comparing people with a psychosomatic misdiagnosis versus those with a physical health one, people with a psychosomatic misdiagnosis had higher levels of depression and anxiety, and lower levels of general wellbeing.
- In the interviews, people discussed issues such as self-blame, self-doubt, and reduced self-esteem. They also talked about how it was difficult to get support for the impact the misdiagnosis had, and that sometimes the misdiagnosis was not removed from their medical record so it was still causing a problem.
In interviews, healthcare professionals talked about how one of the difficulties of diagnosing conditions like lupus is that the symptoms are non-specific, and in most cases the person does not have lupus but instead has a more common condition. Some professionals talked about how they felt there was sometimes a miscommunication between doctors and patients, where the doctor thought they were being reassuring by telling the patient it was probably a more common mental or physical health problem, but patients experienced that as being disbelieved.
What were their conclusions and recommendations?
The research team concluded that having a misdiagnosis of a psychosomatic condition before being diagnosed with a systemic autoimmune condition (SARD) had a lot of negative effects on a person’s mental health, trust in their healthcare team, and self-worth. Because people with a psychosomatic misdiagnosis had more negative impacts than people with a physical health misdiagnosis, it means that the negative impacts were likely to be due to the fact it is a psychosomatic misdiagnosis specifically, rather than a misdiagnosis more generally.
They said that along with considering the physical damage that can come from a long delay to diagnosis and starting treatment, there should be more consideration given to the mental health damage caused by a misdiagnosis, and by psychosomatic misdiagnosis in particular. They suggested that a psychosomatic misdiagnosis could be a cause of mental health symptoms like anxiety.
The team recommended that people with misdiagnoses need support, and open acknowledgement and discussion with their healthcare team:
- Having a previous misdiagnosis should be acknowledged openly so that people can have a discussion with their current healthcare team about the impact that it has on them, trust can be (re)built, and support can be offered.
- People with SARDs should have access to psychologists and therapy, and this should particularly be considered for people who have had a previous misdiagnosis.
- More awareness is needed of SARDs amongst healthcare professionals, so that it is considered as a diagnosis sooner.
Next steps
The research team continue to investigate neuropsychiatric symptoms, mental health, and inequality in systemic autoimmune rheumatic diseases like lupus.
More information
You can access and read the full scientific paper on the journal’s website.
If you need support
It is very common to experience an impact on your mental health from living with lupus or from having had a misdiagnosis – you are not alone and you are not wasting anyone’s time. There are a number of places you can find mental health support.
- The Wren Project is an emotional support service specifically for people with autoimmune conditions. You can refer yourself, and you do not have to go via your GP or other healthcare professional.
- The NHS offers different mental health services, such as counselling and helplines. Sometimes you have to be referred by a GP, and sometimes you can refer yourself. You can find what services are available in your local area and how to access them on this page.
- You can also access NHS mental health services by calling 111 (if it is urgent but not an emergency) or 999 if it is an emergency. Your mental health is just as important as your physical health and you are not wasting anyone’s time.
- You can call a charity mental health helpline. You can find a list on the Mind website. If you need to talk right now, these helplines are free and open at all times:
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- Samaritans – 116 123 (UK-wide)
- C.A.L.L. – 0800 132 737 (Wales only)
- If you would prefer to text rather than talk, you can text SHOUT – 85258 (UK-wide)