Inside the Silence: My Battle with MOGAD Encephalitis

The purpose of this text is to remind patients—especially those who experience severe encephalitic symptoms from MOGAD—that they are not alone.

We may not suffer from limb loss, visual or auditory impairments, but we temporarily lose many of our cognitive and coordination skills. Some of us even lose our memory and speech abilities. We experience symptoms resembling ADEM.

As for my own journey: during the eight months of intense demyelination, I experienced difficulties in perception, thinking, speaking, and balance—along with deep psychological impacts. My symptoms worsened especially in crowds, at work, or after receiving upsetting news. I told doctors countless times, “Something is not right,” yet they failed to see the battle I was fighting inside.

Before MOGAD, I was a designer working 16-hour days, meeting 15 clients daily, six days a week. Suddenly, I couldn’t even focus on a single task for more than six hours. That’s what led me to explore the psychological aspects of MOGAD.

For example, during a week spent completely alone in silence, all my symptoms disappeared. But when I returned to the city, the inflammation and pain returned. At first, I wondered if this might be related to electromagnetic sensitivity. But my research showed that such symptoms are often tied to anxiety. That made me question the complex relationship between stress, fear, and the illness itself.

I studied patient experiences across multiple platforms including The MOG Project. I asked questions, because with demyelination, we don’t just suffer physically—we suffer in silence.

Friends would look at me and say, “You look fine, so what’s the problem?”
I later learned this was a common experience for many patients.
And I wasn’t surprised.

The best metaphor I can offer is:
“Being alone among dozens of people.”

Sometimes in a hospital corridor, sometimes at a family dinner, sometimes among a group of friends… Even when you’re surrounded by dozens of people, the fact that no one can see the weight of what you’re going through makes you feel even more alone. Invisible illnesses like MOGAD create invisible loneliness.

I realized most MOGAD patients are incredibly sensitive people. So sensitive, they pretend to be “fine” just to avoid worrying others. I did the same. I put on a performance for my boss, my family, my friends. But unfortunately, at some point that movie ends.

Shortly after being diagnosed, I lost my husband, my job, and then my father.
No one truly understood what I was going through—except others who had experienced brain inflammation.

Months of insomnia, fear, anxiety, emotional exhaustion…
A never-ending cycle.

I knew the only way out of it was deep, restorative sleep. But to sleep, I first had to calm my nervous system. I tried supplements like melatonin, but they only sedated me without bringing true rest. High-dose steroids, given in error, led to cardiac issues—further complicating my situation.

Here was my daily routine: I would wake at 6 a.m., try to go for a run—fail. Get ready and go to work. I had to arrange a personal Uber driver because I couldn’t even walk 150 meters to the metro. (I’ll share these details in my book.)

I was trying to work at work, and after coming home and eating something in the evening, I would call my family who lived far away, and I wanted them to talk to me without waiting for an answer. Just having someone on the other end of the phone who could understand me was good for me. My family would call me in turns..

Many people thought I was “crazy.”
“Why didn’t you quit your job and move back in with your family?” they asked.
But they didn’t know that moving back would have meant surrendering.
I was going to fight, even if I was fighting alone.
And I did.

Eventually, I took a few weeks off and sought therapy. It made a huge difference. Gradually reducing the steroids also eased my cardiac problems and improved my sleep.

I often told myself:
“If the doctors researching this disease had to live with our pain for just two days, they wouldn’t leave the lab until they found a cure.”
And I know many of you are thinking the same.

Now, let’s get to the point: why couldn’t I talk, think, or perceive things too late? I reviewed my MRI results. The lesions in my brain—left frontal juxtacortical region, corpus callosum, periventricular area of the left temporal horn—explained everything. Lesions in my left hemisphere impaired my motor skills and cognitive functions.

I couldn’t even grip a pencil while sketching. The white matter damage affected not only physical but also emotional regulation.
The lesion at the T6–T7 level of my spine made walking difficult, but that was a secondary concern for me.
Because I believed: If I could reclaim my mind, I could reclaim my body.

I continued to work, though I could only manage a few hours a day. I spent the rest of my time researching. Eventually, I had to quit. Family issues worsened my mental state, triggering more disease activity.

I became convinced that at least 50% of this disease is psychological, or at the very least, greatly exacerbated by emotional distress.

Among all the patient stories I read, it wasn’t adult MOG patients that I resonated with—it was children with ADEM-like encephalitic symptoms.

I read about a 4-year-old girl diagnosed with MOGAD. After 2 years of treatment, she finally started school; only two weeks later, she had another attack.
While I worried about my career, that little girl couldn’t even continue her education.
It broke my heart.

So why did the relapse happen after school started? Why were my symptoms getting worse while I was at work? Is stress and anxiety a symptom, or a trigger? Or maybe both?

And finally, I ask:
“Why don’t doctors send us to a neuropsychiatrist or psychologist?
Or was I the only one who wasn’t referred?“

Sadly, I found out I’m not alone. Many patients say they never got that kind of support, and it was never suggested.
On the other hand, there are patients who feel grateful just to be offered a single half-hour psychological therapy session — often months after their diagnosis

Stress, anxiety, and worry play a big role in this disease. That’s why doctors have a big responsibility:
To take patients’ mental health seriously and to include psychological support in their treatment protocols.

I dedicate this writing to those who reminded me I wasn’t alone when I prayed in the dark…
And to you, reading this right now.
You’re not alone.

With love…

Note: In other sections, I’ll be sharing how I explored and discovered some of the things that have personally helped me. 👉🏽