I still go to work every day. I lead meetings, present ideas, make creative decisions, and deliver projects I am proud of. I laugh with colleagues, make plans for the future and, to anyone watching, I probably look exactly like the ambitious professional they have always known.

Sometimes I joke with my colleagues that Charlottenburg is not really Berlin anymore. It’s basically Potsdam. They laugh because it’s an exaggeration. To them, it’s a joke about distance. For me, it isn’t really about distance at all.

A thirty-minute journey across the city carries far more than the inconvenience of getting from A to B. Long before I leave home, the journey has already begun. Will there be somewhere to sit? Will the train be crowded? Will I have to stand? Will the dizziness start? Will I feel steady enough to walk through the station? Will anyone notice if I don’t?

By the time I arrive, I often feel as though I have already completed the hardest part of my day, and all I have done is travel across the city.

That is what people cannot see. Sometimes the hardest part of living with a progressive neurological disease is not the physical effort. It is the constant anticipation of what might happen before anything has happened at all. As difficult as it is to live with a rare disease, learning how to navigate the healthcare system has, at times, felt like a second diagnosis.

When your condition is uncommon, you quickly discover that you cannot simply become a patient. You become your own advocate. You learn the language of medical journals, clinical trials, and off-label treatments, not because you want to, but because you are searching for answers that too often are not waiting for you in the consultation room.

I do not set out to become an expert on my own disease. I do it because I have to. I read medical papers, search clinical trial registries, follow emerging research, and walk into appointments prepared to ask about treatments that may help manage my symptoms. Not because I believe I know more than my doctors, but because when you live with a rare disease, you learn that no one has as much at stake in finding answers as you do.

What surprised me most was not only how little information there was, but how alone I felt after receiving my diagnosis. You are told that you have a progressive neurological disease. You are told there is no cure. You are told your future will change in ways nobody can predict. Then the appointment ends. Your neurologist has another patient waiting. The clinic carries on. The waiting room fills with new names. Life inside the hospital continues exactly as it should. Outside, yours has just changed forever. You leave carrying the weight of a conversation that will stay with you for the rest of your life, yet you are expected to somehow know how to carry it.

I remember thinking that someone had just told me my life would never be the same, yet nobody stopped to ask how I was coping with hearing those words. Nobody automatically referred me to a psychologist or someone trained to help me process what this diagnosis meant for my life, my marriage, my career, or the future I had imagined. The focus understandably remains on the disease itself. But living with a progressive illness is as much a psychological journey as it is a neurological one.

There is something profoundly lonely about that moment. The healthcare system has to keep moving, and I understand why. But I was still standing in the same conversation long after everyone else had left it. No patient should feel responsible for educating the very system they turn to for help.

People often associate grief with losing something that once existed. A loved one. A relationship. A home. A chapter of life that has come to an end. Those losses are visible. They leave behind photographs, memories, and stories that can be shared with others.

But there is another kind of grief that rarely gets spoken about because it leaves behind none of those things. It is quieter than that. It is the grief of futures that slowly disappear before you ever have the chance to live them.

I do not grieve running marathons because I never ran them. I do not grieve climbing mountains because I never climbed them. I do not grieve travelling the world without thinking about balance, fatigue, or whether my body will allow me to enjoy the journey.

What I grieve is the possibility. The quiet confidence that if one day I wanted to do those things, I simply could.

Most people move through life believing their future belongs to them. They assume tomorrow will offer more opportunities than today and that, if they dream of doing something, their body will be there when the time comes. Living with a progressive disease quietly changes that relationship with the future. Instead of asking what I want my life to look like in ten years, I sometimes find myself wondering what parts of it will still be available to me.

It is a strange kind of grief because you are not mourning memories. You are mourning possibilities. You miss places you have never been, experiences you have never had, and versions of yourself that may never have the chance to exist.

Those thoughts rarely arrive all at once. They appear in ordinary moments.

When friends excitedly plan a hiking holiday.

When my husband and I talk about places we would love to visit.

We postponed our honeymoon for what felt like all the right reasons. We had just bought our apartment and paid for our wedding, so waiting seemed like the responsible decision. We told ourselves there would always be another opportunity. Now, when we talk about where we should finally go, another question quietly enters the conversation: will we ever be able to? Not because we won’t find the time, but because I no longer know what my body will be capable of by then.

The same thought appears when I think about places that already mean something to me. Cities I’ve fallen in love with. Streets I’ve walked with friends. Beaches where time seemed to stand still. I don’t only wonder where I’d like to go next. I find myself wondering whether I’ll ever have the chance to go back.

Living with a progressive disease doesn’t only make you question what lies ahead.

Perhaps the hardest part is not wondering what you will lose tomorrow. It is wondering whether you have already experienced something for the last time without ever knowing it. That uncertainty changes more than plans. It changes the way you experience success.

Every promotion I celebrate exists alongside another neurological appointment. Every professional milestone is accompanied by another reminder that my brain is changing in ways no amount of determination, discipline, or optimism can control. It is possible to feel genuinely proud of how far you have come while quietly wondering how much longer your independence will remain entirely your own.

From the outside, people often tell me I am handling everything remarkably well.

Maybe I am.