A personal story about living with Fabry disease—pain, fatigue, and the small things that still give me strength.
Fabry disease is a companion I never chose. It gets up with me in the morning, follows me through the day, and sometimes decides—without being asked—which plans are possible and which are not.
From the outside, there is often very little to see. I may look healthy, have a normal conversation, or laugh with other people. But inside, things can feel very different: pain, exhaustion, and a kind of tiredness that cannot simply be solved by an extra hour of sleep.
Before Fabry Had a Name
Even as a child, I knew that something in my body did not feel right. I often had stomach pain, went through medical examinations, and heard one well-meaning explanation after another. But for a long time, there was no real answer.
When symptoms have no name, you eventually begin to doubt yourself. Am I making too much of it? Am I simply more sensitive than other people? Why can’t I manage things that seem completely normal for everyone else?
A diagnosis finally gives the invisible a name. It does not automatically make everyday life easier, but it confirms something important: the symptoms are real. They are not imaginary, and they are not a personal failure.
When the Body Makes Its Own Plans
Life with Fabry disease can only be planned to a certain extent. On some days, I feel relatively well and want to make the most of my energy. On other days, even a small task can become a challenge.
Neuropathic pain and fatigue can have a major impact on daily life. For me, fatigue is not simply being tired. It feels more as if someone replaced my battery with an older model—one that charges slowly and sometimes drops from 40 percent to 3 percent without warning.
That is when I need to rest. Not because I am lazy. Not because something is unimportant to me. But because my body has reached a limit.
Accepting those limits is not always easy. Even after all this time, I sometimes want more than my body can give. But I am gradually learning that taking a break is not the same as giving up. It is a necessary part of my life with Fabry.
What Other People Cannot See
Invisible illnesses come with a particular challenge: you often have to explain why something is not possible right now.
A cancelled appointment may look like a lack of interest. A quiet day may be mistaken for laziness. Stepping away from a noisy or exhausting situation can easily be misunderstood.
And the constant need to explain yourself takes additional energy.
I do not expect other people to fully understand every symptom. That is probably impossible. But I hope they will listen and take my experiences seriously.
Sometimes a simple “I believe you” is worth more than any well-meant advice.
I Am More Than My Diagnosis
Fabry disease is part of my life, but it is not my whole life.
I am not only a patient. I am a father, a dog person, a photographer, a nature lover, and someone who enjoys developing new ideas. I treasure time together, small trips, gentle bike rides, and quiet moments with my dog Liza. With my camera, I notice details that others may walk past—light, colours, landscapes, and little wonders along the way.
These moments do not cure Fabry. But they remind me that my life consists of much more than medical appointments, medication, pain, and exhaustion.
Even on difficult days, something beautiful can happen. Sometimes it is only a photograph, a kind conversation, or a peaceful moment in nature. Yet these small things can carry great meaning.
Why I Share My Story
I talk about my life with Fabry disease because rare diseases need greater visibility. Behind every diagnosis is a person with hopes, fears, dreams, and a story of their own.
Perhaps someone will recognise themselves in my words. Perhaps another person living with Fabry will feel a little less alone. And perhaps someone who is healthy will better understand how an invisible illness can affect every area of life.
We do not always have to be strong. We do not have to fight every day, and we do not have to turn illness into a heroic story.
We are allowed to be tired. We are allowed to have bad days. We are allowed to accept help.
And we are still allowed to hope, laugh, make plans, and fill our lives with beautiful moments.
Fabry disease walks part of this road with me. But the illness alone does not decide where that road leads or which stories are created along the way.
I am more than Fabry. And my story is worth telling.
What do you wish others understood?
What is one thing people often miss about your everyday life with a rare disease? Join the forum conversation about what others should understand. A few sentences are enough. You can read without an account; posting requires a free, approved account.
You can also watch my Fabry video in Patient Stories, where personal experiences have space alongside the diagnosis.
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