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People with Lupus Suffer Acutely Mentally and Emotionally and Deserve High Level Bespoke Care
Unfortunately some people with lupus are scared of psychotherapy and I will explain why and why my brand of counselling and psychotherapy for lupus is so different and so important:
Lupus is sometimes referred to as a “rare” medical condition but this is incorrect. Currently, it is estimated that some 5 million people worldwide have some form of lupus, including 1.5 million Americans, and, on these numbers alone, it is more common than cystic fibrosis, leukemia, muscular dystrophy and multiple sclerosis combined. Shortly after my own diagnosis in 2012, I realised that I had a very complex illness, with a very strange name that hardly anyone had heard of. The reality is that now even over 10 years later lupus remains a mysterious illness, unfamiliar to most and widely and repeatedly misunderstood even within the medical community itself.
Furthermore, the emerging truth is that even these figures mask a shocking reality: Personal testimonials, psychiatric reports and a series of research papers stemming from Cambridge University in 2020 have demonstrated systemic flaws in the understanding, investigation and treatment of lupus symptoms.
Cumulatively, the evidence has been confirming that lupus is being massively misdiagnosed and left undiagnosed.
Unfortunately, there is not a simple blood test or a single visual marker to diagnose lupus. Instead there are over 10 official symptoms and 4 or more are needed to conclude a diagnosis, according to the American College of Rheumatology.
Hallmarks are chronic pain and fatigue in some 90% of cases of Systemic Lupus: As the eminent Director of the renowned Johns Hopkins Lupus Center in the United States Dr Michelle Petri wrote: “Our patients…have pain and fatigue that cannot be described”. It is the chronic pain and fatigue which most often sends patients to their doctors or to emergency departments.
The official list also includes 3 sets of blood anomalies and these in particular seem to be causing problems within the medical profession itself when it comes to knowledge and confident diagnosis. The majority of people with lupus have anti-nuclear antibodies or ANAs present in their blood, but so do people without lupus so their presence does not confirm lupus as a standalone test but rather it becomes part of a diagnostic jigsaw.
A report led by Melanie Sloan of the Lupus Research Group of the Institute of Public Health at the University of Cambridge published in February this year pointed out that over 30% of lupus patients have histories of testing both positive and negative for anti-nuclear antibodies at different times and the research team was concerned to have discovered that these patients were taking even longer to be diagnosed, leading the team producing the report to conclude: “The much greater delay in seronegative patients in this study…was statistically significant and suggest that the real percentage is much higher, with many potentially remaining undiagnosed and untreated”.
Lupus Diagnosis Delays and Confusion Highlighted by Recent Study and Forum Reports; Lupus Counselling May Help Address Barriers to Diagnosis
Perhaps more startling and less forgivable was also the discovery by the same study that those who have the more specific biomarker for Systemic Lupus which is the anti-Ds DNA blood disorder are still experiencing long delays in their diagnosis. It was reported that the average time taken for these patients to be diagnosed was an alarming 6 years and 2 months.
The report concluded: “One of the barriers to diagnosis is from physicians mistakenly considering ANA (anti-nuclear antibodies) and anti-Ds DNA positivity as essential for referral to rheumatology/diagnosis, also sometimes then failing to interpret or test for other relevant haematological or immunological abnormalities, as specified by the BSR guidelines”.
Lupus Misdiagnosis and Delayed Diagnosis
The level of confusion is perhaps best demonstrated in recent evidence from the lupus forums, where on the one hand members report that their rheumatologist was hesitant to say 100% that they had lupus because their bloodwork would be positive then negative and because they did not always have every symptom, whilst another was able to be diagnosed successfully with lupus despite never having positive ANA but purely, and of course, correctly, on the basis on having some of the official symptoms.
The latest Cambridge Research Group report from February this year concluded that: “The average time to diagnosis was 6 years and 11 months”, so almost 7 years. For 24% of their respondents it had taken over 10 years and 22% had been diagnosed within 1 year. This report reinforced the American 2017 study which found that: “At least 1 wrong diagnosis was reported by 76% of respondents”.
In 2017, research by the Lupus Foundation of America into a large group of over 3,000 participants in the US found that 41% had been diagnosed with something else first before being confirmed lupus patients. Now you would think that this was all down to complications arising from the fluctuating nature of lupus and of it having mild, moderate and severe forms. However, you would be wrong, the study found that some 34.5% of the respondents were reported as having “severe symptoms” while, amazingly, 13.3% had symptoms that were “life threatening”.
It is increasingly clear that misdiagnosis is endemic and double-digit non diagnosis highly likely.
You might ask what on earth were 76% of respondents diagnosed with if it was not lupus? The answer is momentous and tragic and it is why some with lupus are very wary, even scared, of counsellors and psychotherapists who say they treat lupus.
The prevalence and consequences of misdiagnosis in lupus patients.
Shockingly, the Cambridge research team found that that a very frequent wrong diagnosis was that the symptoms were caused by mental difficulties, such as depression and anxiety. In summary, a classic “it’s all in your head” diagnosis. In the 3,000 person study they found that some 54% were told that there was nothing physically wrong with them. Let’s just repeat that: 54% were told the cause was mental rather than physical which is over half of all those people who were, eventually, correctly diagnosed with lupus.
I can confirm first hand stories where people who have eventually been diagnosed with lupus have been referred to psychotherapists. I have also come across several occasions where if patients have been tenacious in trying to find an answer for their symptoms or even taken a list of their symptoms to a consultation they have been accused of an unhealthy obsession with their condition - a state of mind known as “medical anxiety”. Medical anxiety is short hand for symptoms which exist or are made worse by patient paranoia.
The cruel reality is patients who are suffering with agonising pain, hugely debilitating fatigue, ulcers and rashes are being disbelieved and disbelieved over extended periods of time.
This process is intensely damaging. Super intelligent, high achieving patients (I have come across nurses, lawyers and members of the armed forces) with no history of anxiety or depression being treated in a manner which constitutes “gas-lighting” to all intents and purposes.
Now Lupus chiefly manifests in women between the ages of 15 years and 44 years old, but it can appear in men and, in fewer cases in children. Overall, it is estimated that 90% of the cases diagnosed are women of child bearing age.
At a time of acute vulnerability, they begin in some cases to doubt themselves and wonder if indeed they are imagining everything. At the very least they are left horribly confused and totally unsupported. Of course all the while that these spurious mental diagnosis are being forced on them their potential dangerous symptoms are being left untreated.
Non-diagnosis is not just a sentence for unresolved pain and fatigue. Without the correct medication, the disease can go unchecked. This can have profound implications for the amount of damage that can be done to internal organs. Also, undiagnosed and untreated lupus can have severe implications for unborn children with a higher risk of miscarriages and the need for very carefully monitored pregnancies. Some of the damage to kidneys, the heart, the lungs and the liver can prove irreversible.
Implications of disbelief by the medical profession on patients' support structure and psychotherapy.
Also, there are wider implications of disbelief by the medical profession, which is that it can have a knock on effect on the patient’s friends and family. In the worst cases, what should be the patient’s support structure does not believe them either. Far from getting the help and understanding that they deserve, they get told to “snap out of it” or “think more positively”. Instead of appreciating that a potentially life threatening chronic illness is in play, family and friends can let be known that patients are being self-indulgent, work-shy prima donnas. One poor lady was advised by her husband that he thought she would cope better if she did not “wallow” in her symptoms.
Understandably patients can feel frustrated, confused, betrayed, isolated, abandoned, angry, devastated and some cases traumatised. However, the worst aspect of this is that psychotherapy gets a bad name. I do not believe that it is the job of psychotherapists to try to persuade people that they are mentally rather than physically ill and that symptoms are in fact imagined. There have been occasions when I have to explain very carefully to totally distressed patients that I am not going to use my training to tell them that their illness is all in their mind.
As a psychotherapist specialising in lupus, I frequently treat people not only for the mental and emotional implications of having this challenging disease but also very often for the long and difficult journeys they have experienced in reaching a successful diagnosis.
So for example instead I use my skills to provide the following indicative but not exhaustive list:
- A totally safe, respectful, confidential and professionally supported space where clients are listened to properly and in which they can pour out their true thoughts and feelings.
- A space which totally understands their often long and complex route to diagnosis and repair the distress and trauma which are often the consequence.
- Support and repair when family, friends, colleagues and employers lack understanding.
- Teach new techniques and methods for communicating effectively the realities and requirements of lupus in the face of ignorance or criticism thereby overcoming guilt or victimization.
- Support and treatment for the understandable worry and fear associated with being diagnosed with a chronic illness.
- Grief therapy for the potential loss of ability and change in the way of life.
- Cures for the negative emotions that come with loss of ability such as guilt, frustration and anger.
- Solutions for panic, worry, despair, chronic anxiety and overwhelm.
- Repairing loss of confidence and self esteem.
- Solutions and training for new, much more beneficial, ways of making adjustments for lupus symptoms such as handling flares and structuring activities going forward.
- Provide training and techniques to create resilience in the face of lupus symptoms and lupus consequences.
- Rebuild contentment and calm.
- Provide intense support and therapy for a new sense of hope.
- Rebuild clarity and confidence in a way forward.
- Rebuild a sense of purpose.
- Training and techniques for re-establishing daily happiness.
- Rebuild a positive outlook on life.
- Re-establishing a sense of joy in life.
In my opinion, and because of my experience of its benefits, psychotherapy is not a substitute for an accurate diagnosis, instead it should be an essential element of the comprehensive support provided to people with lupus. I believe that this complex and often life changing illness simply has to have an holistic, 360 degree approach which delivers physical, mental and emotional help. Working alongside knowledgeable doctors, rheumatologists and alternative practitioners, I provide solution focused, individually tailored mental and emotional help and transformation at the point of need.
You have been diagnosed with a complex and challenging illness therefore you deserve extra support and wraparound care so that you can lead your best life again.
If you would like to experience an example of the care that I can provide for panic and overwhelm please click here: https://tiny.cc/lupustherapyguide