Trigeminal neuralgia affects the fifth cranial nerve, which provides sensation to the face through three main branches: V1, V2, and V3. The pain is frequently described as electric shocks, lightning strikes, or severe burning. For me, it began suddenly in November 2018 while I was sitting at my desk at work. Without warning, I felt what I can only describe as lightning striking my face. It felt as though half my face collapsed. The pain was so intense it was like being cut with a knife. It lasted around 30 seconds, but it was terrifying. I also felt dizzy, disoriented, and experienced a crawling sensation across my face.

I was brought to hospital with a suspected stroke. Trigeminal neuralgia was later suggested, but obtaining clarity and continuity of care proved extremely difficult. I was placed on an urgent public neurology waiting list, with a one-year wait. I sought private care, yet even privately the waiting time to see a neurologist was five months, largely due to the limited number of neurologists in Ireland.

During this time, my symptoms escalated. Within weeks, I developed widespread pain throughout my body. Medications provided little relief despite significant side effects. Because my presentation was not considered “classic” trigeminal neuralgia, I was referred between neurologists and received differing provisional diagnoses, including trigeminal autonomic cephalalgia. I travelled across the country to see specialists, all while having to stop work completely.

At my worst, I was experiencing up to 100 severe facial pain attacks per day.

Diagnostic imaging became another challenge. Several MRIs had to be done privately at the beginning due to long public waiting lists. Referrals were lost. I repeatedly had to contact hospitals and radiology departments to ensure I was still on waiting lists. When my neurologist later insisted that an MRI with contrast and an MRA be carried out in a public hospital, the wait for that appointment was eight months.

Eventually, four and a half years into my journey, imaging revealed a mechanical cause: my right superior cerebellar artery was looping around my trigeminal nerve, compressing it and triggering the pain. This was the first time there was a clear physical explanation. I was placed on the public waiting list for neurosurgery, while also consulting privately with one of Ireland’s leading specialists about microvascular decompression. I was ultimately seen privately within three months, compared with an estimated three-year public wait. After careful consideration, I decided to continue managing my symptoms conservatively, as I had learned coping strategies that allowed me some stability.

During the most difficult period of my diagnostic journey, I found invaluable support through the Facial Pain Association in the United States. Their educational resources, webinars, and access to leading specialists, including clinicians from institutions such as the Mayo Clinic and Cleveland Clinic, helped me better understand my condition and advocate for myself. This kind of patient education and peer support proved essential when navigating complex care.

Alongside trigeminal neuralgia, I was later diagnosed with fibromyalgia, and subsequently with chronic Lyme disease, only identified after blood samples were sent abroad for testing. These overlapping diagnoses highlight a reality many people with rare disease face: comorbidities, uncertainty, and fragmented care.

One of the most difficult aspects of living with trigeminal neuralgia is that I look well. On the outside, I appear fine. On the inside, my body has often felt like it was shutting down. Simple daily tasks, brushing my teeth, brushing my hair, putting make up, could trigger pain. Even a light breeze on my face could cause an attack. The fatigue was profound.

As a mother of two, this was devastating. Most days I could not cook for my family or manage basic household tasks. My sense of identity as a mother was shaken. While some clinicians showed genuine empathy and tried to help, others dismissed my symptoms or implied that they could not be as severe as I described. This experience is, unfortunately, common among people living with rare and invisible illness.

Rare disease also challenges the structure of care. Appointments are short. In A&E, time is even more limited. It is not realistic to explain complex, multi-system illness, multiple consultants, medications, triggers, and coping strategies in five or ten minutes. Yet patients are often judged on what can be observed in that brief window.

I experienced this again when I presented to hospital with symptoms initially suspected to be a cardiac event, which later turned out to be costochondritis. After waiting seven hours in A&E, the physical stress exacerbated my other conditions. I do not cry out or appear distressed, not because I am not in pain, but because doing so would send my nervous system into overdrive. Breathing techniques, meditation, and stress reduction are essential tools I use to keep pain manageable, but this can be misinterpreted as coping well or not being unwell.

Over time, I adopted a more holistic approach to managing my condition, addressing stress, adjusting my diet, pacing my days, and listening carefully to my body. This did not cure my illness, but it allowed me to regain some agency.

That process led me to write my book, But You Look Just Fine. Writing became a way to process grief, loss, and identity, but also a way to give voice to others living with invisible illness. I later began a podcast for the same reason. Through my book and podcast, I hope to contribute to a broader conversation about patient partnership in rare disease care, and to offer healthcare professionals a deeper understanding of what invisible illness truly feels like from the patient perspective. I have not been able to return to work due to the unpredictable nature of my condition, but advocacy has given me purpose.

Seven years into this journey, I have learned that it is okay not to be okay. Some days I can do small things; some days I cannot. Both are valid. I now try not to measure my days by pain levels alone, but by moments of connection and what I can notice and appreciate: a flower, a bird at the gate, a quiet conversation with my son, music, gentle movement, time in nature. These moments matter.

With Rare Disease Day on February 28, I believe it is important to emphasise that rare diseases are not rare in their impact. With over 300 million people worldwide living with a rare disease, many patients are misdiagnosed or never diagnosed at all. Awareness, education, and, above all, belief and empathy from healthcare professionals can make a profound difference.

Looking fine does not mean being fine. Listening to patients, especially when the condition is rare and complex, is not an optional extra, it is essential care.

Original source: ie