"Have you tried relaxing?" The painful barriers to an auto-immune disease diagnosis
After six long, precarious months, pervaded with countless anxiety-laced Google searches, sleepless nights, and the deterioration of my mental health, I finally received a diagnosis.
See, one night, six months ago, I realized 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 down the peculiar difficulty on a few G&Ts, some Amstel, and a heavy night of celebration.
The day after, my once estranged lips could finally touch again. I brushed off the incident as an odd response to the alcohol and thought nothing more of it. A few days later, however, I was working my way through a perfectly seasoned falafel wrap, and for the life of me, could not chew through it. My tongue and cheeks were in conflict and couldn't 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. Like before, I put this difficulty down to the coarseness of the bread, or perhaps the size of the falafel.
Following falafel-gate, I no longer experienced odd facial behaviours and therefore relegated prior incidents to the lowest tier of 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. Again, I dismissed the event as a symptom of an oncoming cold. For three days, the nasality of my voice intensified, to the point I was no longer audible to others. Again, after a few days, all symptoms simply faded.
In October last year, however, the symptoms returned, this time coupled with a heaviness in my tongue, nasal regurgitation - liquids or foods coming out of your nose post-ingestion - and increasing pain in my throat. I hurried to the GP. At the GP, my concerns were not only trivialized as "normal", but the GP insisted I had contracted an STD - without any sort of physical assessment. Regardless of this, I was referred to an 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. I was troubled by the lack of proactiveness considering speech was just one part of the many symptoms I was presenting at this point. I tried expressing this to the ENT specialist, but he maintained that he had seen many cases like mine, largely amongst women, where stress had been at the root. Out of protest, I threw out his list of potential therapists when I got home.
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 as I began to avoid interacting with people to prevent having to explain what was happening to me. I 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.
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 like I was being gaslighted.
Medical gaslighting is a common phenomenon that plagues folks that belong to certain communities, specifically Black women. Research has shown that Black people, specifically Black women, often have their symptoms dismissed and healthcare practitioners are more likely to describe Black patients as "uncooperative or non-compliant", which inadvertently affects the quality of treatment available to this group.
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 would be 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 - emphasis on finally - carried out a blood test - six months after my first symptom and four months since my first visit to the doctors. I was told, however, that I needed to wait five weeks before I got my results. More waiting. What if I acquired new symptoms? What if what I had was fatal? I felt like there was no haste to help me or at least provide me with some comfort. My quality of life had depleted significantly in the last few months, and I so desperately sought a diagnosis and remedy.
I returned to my speech therapist and pleaded that what I had was not a functional disorder, but rather a neurological one. At this point, I had spent hundreds of euros on speech therapy, an amount that could not be covered by health insurance. She maintained that my symptoms were consistent with a functional, stress-related disorder and not a neurological one. Her stance was disheartening because I was painfully conscious of how my body was not okay, and yet I had several professionals continuously tell me otherwise: 'it's a habit', 'you're stressed'.
As anticipated, my symptoms worsened - eating became unbearable and I plunged into a life of complete isolation. 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.
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 the surgery to remove my thymus gland has been scheduled for this year.
When I initially put pen to paper - or rather finger to laptop key - I aimed to do two things with this article: improve awareness around MG for those experiencing it and point out the failures of the Dutch healthcare/medical system that prohibited me from getting an early diagnosis. 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 realized that I could have been doing these things sooner if only a practitioner had taken me seriously. From my first visit to the GP in October, I acquired six more symptoms in the period that I was not diagnosed.
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 long. 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 out of my habit. I couldn't help but think that my identities, 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. 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 came across personal accounts from people with MG and therefore want to add to the literature that real people are behind these disorders/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 you will be okay.
Written by Vanessa Ntinu