Lupus, an autoimmune disease that causes the body's immune system to attack healthy tissue, is notoriously difficult to diagnose and manage. It is a rare condition—around 41 people out of 100,000 have lupus (Clémence Arnaud, Carenity, 2021). Symptoms can vary greatly from person to person and often overlap with other conditions, leading to a complex and at times, frustrating healthcare journey. One of the most difficult challenges faced by many individuals with lupus is medical gaslighting. This is a phenomenon where patients' symptoms are dismissed, minimised, or misunderstood by healthcare providers, leading to delays in diagnosis, improper treatment, or a lack of empathy.
What is Medical Gaslighting?
Medical gaslighting refers to the dismissal or invalidation of a patient's symptoms by healthcare professionals, making them feel as though their experiences are exaggerated, imaginary, or unimportant. The term is borrowed from the psychological concept of "gaslighting," where someone manipulates another person into doubting their reality. It can be linked to missed diagnoses, delayed treatment, and poor health outcomes (Heidi Godman, Harvard Health Letter, 2024). For people living with lupus, this can mean their pain, fatigue, and other symptoms are either minimised or attributed to unrelated causes, rather than the autoimmune disease they are struggling with.
Unique Challenges for People Living with Lupus
Lupus is a highly variable disease, with symptoms that can range from joint pain and skin rashes to more severe issues like kidney damage or neurological symptoms. As these symptoms often mimic other conditions, patients can face a lengthy and frustrating diagnostic process. According to the Lupus Foundation of America, it typically takes 6 years on average for a lupus diagnosis to be made, despite many patients experiencing symptoms long before receiving proper care.
Given its complex nature, people living with lupus frequently encounter situations where their symptoms are not taken seriously. They may be told their fatigue is just a result of stress or that their pain is a normal part of aging. Such responses can not only delay diagnosis but also exacerbate feelings of isolation and hopelessness. This is where medical gaslighting becomes especially harmful.
While discussing medical gaslighting with my mother, who has Systemic Lupus Erythematosus (SLE) among various other medical conditions, she had been experiencing the symptoms of lupus for years before her eventual diagnosis. She distinctly remembers symptoms such as butterfly rashes, swollen joints, and continuous nose bleeds throughout her pregnancy with me. Interestingly, the health visitor for my mother after giving birth to me asked if she had lupus, to which she replied, “What is that?”. Unfortunately, it was not followed up and although my mother’s symptoms persisted. it was blamed on reasons such as baby weight in pregnancy or not getting enough sleep due to breastfeeding. It was only years after once we had moved to Ireland and when my youngest sibling was four years old, that she was ultimately diagnosed with SLE.
The Impact on Lupus Patients
The impact medical gaslighting has on people living with lupus can be summarised within four main areas: delays in diagnosis and treatment, increased mental health struggles, undermining trust in medical professionals, and a lack of empathy and support.
As lupus symptoms fluctuate in severity and can change intermittently, if healthcare providers do not have a clear understanding of the disease or a recognition of the symptoms, they may dismiss early warning signs. As a result, a delay in diagnosis could occur whereby patients may go untreated for longer periods, allowing the disease to progress. This could cause irreversible damage to vital organs, such as the kidneys or the heart.
Living with lupus is indeed emotionally taxing in itself due to chronic pain and fluctuating health. When medical gaslighting is mixed into these feelings and doctors invalidate their experience, many people may begin to doubt their own perceptions and mental wellbeing. Consequently, an increase in stress, anxiety and depression is likely, compounding the physical challenges they are already battling every day.
Repeated dismissals can erode trust between people living with lupus and their healthcare providers. This lack of trust can discourage people from seeking care in the future or advocating for their health. If people living with lupus feel that their experiences are being ignored, they are much more likely to hesitate when sharing critical information, which will ultimately compromise their treatment outcomes. When asking for thoughts on the topic of medical gaslighting to my followers, a recurring opinion was that lupus patients feel as though they are not believed, which can lead to the medical issue worsening before being given attention.
Lack of empathy and support can be one of the most damaging aspects of medical gaslighting. Lupus is not just a physical disease, it is an emotional and psychological burden also. When doctors fail to acknowledge the gravity of a patient’s symptoms or struggles to recognise the challenges that come with a hidden disability, it can make it harder for patients to feel supported and validated in their healthcare journey. Furthermore, the ripple effect on their mental health overall can be debilitating due to a constant questioning of themselves and losing faith in their own thoughts and feelings.
Examples of Medical Gaslighting in People Living with Lupus
Three symptoms of lupus are joint pain, fatigue and skin rashes. These symptoms are experienced by a large proportion of lupus patients and can fluctuate in intensity. Fatigue minimisation is an example of medical gaslighting. Doctors may dismiss fatigue as being related to lifestyle factors or stress, failing to recognise it as a serious symptom of lupus. The fatigue experienced is by far beyond normal tiredness. "The best way to understand what fatigue and lupus is like telling them it's like having the flu." Dr. Berman added. "Nothing you can do seems to make the fatigue any better. Also, over time the more and more you experience fatigue, the more chronic it becomes." (Lupus and Fatigue, Jessica R Berman, 2022).
Joint pain and swelling is another symptom frequently experienced by lupus patients. Rather than attributing these symptoms to the autoimmune nature of lupus, some healthcare providers may decide that it is up to everyday wear and tear, which can ultimately delay appropriate care. Similarly, the butterfly-shaped rash that often appears on the face of an individual with lupus is a well-known indicator of the condition. However, it is sometimes misdiagnosed as an allergic reaction or another skin condition, without consideration of the possibility of lupus.
What Needs to Change?
To combat medical gaslighting, there is a need for improved education for healthcare providers on lupus, empathy and active listening, patient advocacy and collaborative care. The medical community must better understand the complexities of lupus, especially its diverse and evolving symptoms. Physicians should be encouraged to treat patients as collaborators in their healthcare journey, acknowledging the lived experience of those with chronic conditions like lupus. Patients need to feel heard and a simple acknowledgement of a patient’s experience, such as “I understand that this must be difficult for you,” can go a long way in building trust and providing emotional support.
In addition, patients should feel empowered to advocate for themselves, whether that means seeking second opinions or asking for more thorough testing. Support groups, online communities and organisations like LUPUS UK and Lupus UK Youth can provide valuable resources and guidance, helping patients navigate their diagnosis and treatment options. Personally, I have also found that support groups, online communities and the organisations mentioned have not only developed my knowledge and understanding further, but has also been a source of inspiration. Finally, a need for collaborative care is required as lupus often requires a multidisciplinary care – involving rheumatologists, dermatologists, nephrologists, and other specialists. Coordinating care between these providers can ensure people living with lupus receive comprehensive treatment that addresses all aspects of their condition.
Reflection
Medical gaslighting is a harmful and often overlooked barrier to effective lupus diagnosis and care. The emotional and physical toll it has the potential to take on a person cannot be underestimated. By improving education, fostering empathy, and supporting patient advocacy, we can ensure that lupus patients, and patients of all kinds, receive the care they need and deserve.
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