Disability, Invisible Illnesses, and the Negative Impact of Misdiagnosis on Young Women
By Rachael Mole — SIC
Disability and invisible illnesses can have a profound impact on a person’s life. These conditions can be challenging to diagnose and often go unnoticed for years. In young women, the consequences of misdiagnosis can be particularly devastating, and healthcare providers must take a comprehensive and gender-sensitive approach when treating patients.
According to the World Health Organization, over one billion people around the world live with some form of disability. However, many individuals with invisible illnesses may not be considered disabled according to traditional definitions of disability. These conditions can range from chronic pain and fatigue to mental health issues, such as depression and anxiety.
One of the most significant issues with misdiagnosis in young women is the delay in treatment, with many young women needing to see several healthcare providers across several specialties across several years before getting an accurate diagnosis.
Another issue with misdiagnosis is the emotional toll it takes. In my experience, this has resulted in medical PTSD from the medical gaslighting I endured as a teenager. There is a feeling of anger, sadness and hopelessness when your symptoms are not taken seriously.
During this time, their condition can worsen, causing additional physical and mental impact. The longer it takes to diagnose a condition, the more difficult it can be to treat and the greater the impact on quality of life. It took me eight years to get an accurate diagnosis after navigating the healthcare system in the UK throughout my teens.
Another issue with misdiagnosis is the emotional toll it takes. In my experience, this has resulted in medical PTSD from the medical gaslighting I endured as a teenager. There is a feeling of anger, sadness and hopelessness when your symptoms are not taken seriously.
For many people, this can also lead to a loss of confidence in their ability to advocate for themselves and a distrust of the healthcare system. Even now, I need support making and attending medical appointments for the reassurance I find in going with someone I trust and to know I have heard and understood everything correctly.
The financial consequences of misdiagnosis are often unquantifiable and overlooked. From the missed potential of earning income to the extra money spent on access and services needed to support with the holistic treatment side of things. I also ended up having to pay to see a doctor in London who finally diagnosed me with Ehlers Danlos Syndrome, at a time when finding a doctor who was able and willing to diagnose this -at the time- rare condition. Throughout my diagnosis journey, there have been multiple times when I have had to pay for appointments and treatments, only to find out later that my condition was not correctly diagnosed. This put a strain on the finances of my family and led to stress and anxiety on my part, not wanting to be a burden to my parents.
Gender bias plays a significant role in misdiagnosis. Studies have shown that women are more likely to receive incorrect diagnoses than men. This may be due to a lack of understanding of women’s health conditions and the fact that many symptoms are often downplayed or dismissed as being due to stress or anxiety. Additionally, women’s symptoms may be misattributed and dismissed as hormonal changes, resulting in a lack of attention being paid to other symptoms and their actual condition.
Healthcare providers must take a comprehensive and gender-sensitive approach when treating young women. At a basic level, this includes taking their symptoms seriously and conducting thorough assessments, but from a bigger perspective, there needs to be a reform in how the medical community address and treat symptoms that present more commonly in women.
About the author
Rachael Mole is the co-founder of SIC, a Community Interest Company bringing together her passion for mentoring, disability access, and workplace inclusion to help to close the disability employment gap in the UK. Rachael is shaking up what it means to have an inclusive workplace. You can find Rachael on LinkedIn here.
