The Fight for Auto-Immune Disease Diagnosis: How Medical Gaslighting Affected Me as a Black Woman
Vanessa Ntinu recounts her experiences of the painful barriers to being diagnosed with an auto-immune disease as a Black woman under the Dutch healthcare system.
Words by Vanessa Ntinu (@vannyntinu)
Illustrations by Frank Gambino (@frankgambinoart)
Stage Zero: How It Started
One night, six months ago, I realised my bottom and upper lip could no longer meet with the ease that they usually did. I had come home from a night out – a little inebriated – and put this peculiar difficulty down to a few G&Ts, some Amstel, and a heavy night of celebration. The day after, when my estranged lips could finally touch again, I brushed off the incident as an odd response to alcohol and thought nothing more of it. A few days later, however, I was working my way through a perfectly seasoned falafel wrap and found I could not chew through it for the life of me. My tongue and cheeks were in conflict, and couldn't seem to come together to perform the simple act of breaking down the contents of my mouth – my teeth were working, screaming for the other parts to cooperate. Again, I put this difficulty down to the coarseness of the bread, or perhaps the size of the falafel.
Following falafel-gate, my odd facial behaviours subsided, so I relegated my concern. Two weeks later, however, my voice suddenly became nasal during a conversation with someone. I stopped myself repeatedly and asked, "Wait, do you hear that?", to which they responded, "Hear what?" I was sure I could hear my voice transition from what I considered to be my normal resonance to a high-pitched nasal sound. Once again, I dismissed the event as a symptom of an oncoming cold. For three days, the nasality of my voice intensified, to the point where I was no longer audible to others. After a few days, all symptoms simply faded as they had before.
In October last year, the symptoms returned, this time coupled with a heaviness in my tongue, nasal regurgitation (liquids or foods coming out of the nose post-ingestion), and increasing pain in my throat. I hurried to the GP, where my concerns were trivialised, and disregarded as "normal". The doctor even insisted I had contracted an STD without having conducted any sort of physical assessment. Despite this, I was referred to an ear, nose and throat (ENT) specialist, who I saw a few weeks later. After an incredibly surface-level assessment, the ENT specialist insisted my symptoms originated from stress and that I "needed to relax". He lazily referred me to a speech therapist, which troubled me, as difficulty with speech was just one part of the many symptoms I was presenting at this point. When I tried to express this to the ENT specialist, he maintained that he had seen many cases like mine, largely amongst women, where stress had been at the root. In an act of frustration, I threw out his list of potential therapists when I got home.
Stage One: Gaslighting
For the next two months, I grew to live with my symptoms. I did, however, acquire new ones that were harder to cope with. One was losing my ability to smile. No matter how hard I tried to smile, chew, or move my tongue around my mouth, nothing moved. I endured this state of unknowing for two more months. Over the Christmas holidays, my symptoms escalated. I could no longer speak for more than two minutes without my voice eventually becoming inaudible. This shattered my self-confidence, and I started to avoid interacting with people to prevent having to explain what was happening to me. I eventually spoke to a friend with an extensive medical background, and they suspected my symptoms were in line with a neurological condition, more specifically, Myasthenia Gravis.
“My concerns were trivialised, and disregarded as "normal"; the doctor even insisted I had contracted an STD without having conducted any sort of physical assessment.”
I returned from my Christmas holidays with a renewed determination to solve the mystery that had plagued my life since August. I went to the GP again, and again, a shallow assessment was carried out. Despite telling them that I thought I may be presenting symptoms in line with Myasthenia Gravis, the GP ruled out any neurological possibilities and retorted that my symptoms were simply a "habit" I needed to break. The whole process of trying to find a cure felt like multiple stages of people not believing me when I was saying that there was something wrong with my body. I couldn’t help but feel I was being gaslighted.
Medical gaslighting is a common phenomenon that primarily affects folks belonging to certain communities – and especially Black women. Research has shown that Black people, specifically Black women, often have their symptoms dismissed, with healthcare practitioners more likely to describe Black patients as "uncooperative or non-compliant". This inadvertently affects the quality of treatment available to this group. I couldn’t help but feel these statistics were indicative of my experience as a Black woman navigating the healthcare system in the Netherlands.
“I could no longer speak for more than two minutes without my voice eventually becoming inaudible. This shattered my self-confidence, and I started to avoid interacting with people to prevent having to explain what was happening to me.”
Stage Two: Speech Therapy
The GP insisted I pursue speech therapy. I finally folded, though I knew my symptoms were far bigger than my voice. I approached a speech therapist and she agreed to help. In the meantime, more symptoms arose: I struggled to swallow, I struggled to breathe when sleeping, I lost focus in my right eye, and was in a constant state of dizziness.
I returned to the GP and told them the speech therapy was proving fruitless, and that my symptoms were intensifying. This GP, thankfully, approached my case with concern. She referred me to a neurologist who finally carried out a blood test; six months after my first symptom, and four months after my first visit to the doctor. Even at this stage, I was told that I needed to wait five weeks before I got my results. More waiting.
What if I acquired new symptoms? What if my diagnosis was fatal? I felt like there was no haste to relieve my symptoms or provide me with comfort. My quality of life had significantly depleted in the past few months, so I desperately sought a diagnosis and remedy.
I saw my speech therapist again and could barely perform some of the exercises, one of which was blowing through a straw. After I failed to complete the exercises, my speech therapist finally conceded. She called the neurologist and insisted they take up my case with more urgency. A few days later, I got a letter saying my blood tests would be available a week sooner.
Stage Three: The Diagnosis
After six long, precarious months that had been pervaded by countless anxiety-laced Google searches, sleepless nights, and the deterioration of my mental health, I finally received a diagnosis.
The results of my test came out on the 11th of March, and I was indeed diagnosed with Myasthenia Gravis (MG), a rare neurological, autoimmune disease where the immune system attacks the nerve signals between the brain and muscles, leaving them feeling weak and often immobile. I was placed on medication – which I must take four times a day – and surgery to remove my thymus gland has been scheduled for later that year.
When I began with my medication, all the unpleasant symptoms I had lived with for the last six months vanished. I could finally eat again, smile again, pucker my lips, spit, chew, laugh, squint, see, breathe, swim, exercise – live. What started as elation turned into rage when I realised that I could have been doing these things sooner if only a practitioner had taken me seriously. Since my first visit to the GP in October, I had acquired six additional symptoms while undiagnosed.
“I could finally eat again, smile again, pucker my lips, spit, chew, laugh, squint, see, breathe, swim, exercise — live. What started as elation turned into rage when I realised that I could have been doing these things sooner if only a practitioner had taken me seriously.”
I understand that MG is an incredibly rare disease, only affecting 14-40 people out of 100,000, so the diagnosis was naturally going to take a long time. I take no issue with this element specifically. I take issue with how quickly practitioners dismissed me. From saying I had an STD, to implying my symptoms were a result of my habits. I couldn't help but think that my identity as a Black, non-Dutch, African woman, intersected to influence how I was being interacted with. It is valuable for healthcare professionals to listen to patients, who, surprise surprise, might be more in tune with their changing bodies than they are. A level of proactiveness would have been appreciated from the six different practitioners I saw throughout my journey.
Besides highlighting the numerous ways the Dutch healthcare system let me down, I also want to empower people that live with MG or may be experiencing symptoms similar to my own. I seldom come across personal accounts from people with MG and therefore want to add to the literature that real people are behind these diseases. I hope I can create awareness around this disease and give assuredness to anyone living with it, experiencing it, or simply starting their journey with it, that they will be okay.
