Living with a chronic illness that mostly exists in the background
Not every rare disease story looks dramatic from the outside
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Sometimes it feels strange to write publicly about Gaucher disease because, most days, I don’t feel particularly sick.
That’s not something people usually expect to hear from someone with a rare disease. There’s often an assumption that chronic illness has to feel constant and consuming, that it should always be obvious, either to the person living with it or to the people around them. But for me, Gaucher disease mostly exists quietly in the background of my life.
If you met me casually, you probably wouldn’t know I have it. My daily life doesn’t look especially medical. I am busy with work, parenting, errands, schedules, and all the ordinary things that fill people’s days. Most of the time, I am not actively thinking about my disease. I don’t wake up every morning feeling sick. I’m not constantly limited by symptoms in the way people may imagine when they hear the words “genetic disease.”
However, it is still a part of my life. It may be invisible to others, but it’s not to my family and me.
It exists in the osteoporosis that developed far earlier than it should have. It exists in the infusion I receive every two weeks. It exists in the Gaucher appointments every six months and in the lab work and monitoring that quietly continue, even during periods when life feels stable.
The strange thing about living with something lifelong is that eventually it can stop feeling unusual. The routines become normal. The medical terminology becomes normal. Even treatment becomes normal.
The quiet experiences are valid, too
Sometimes I think that is why it feels odd to write this column. In many ways, I don’t emotionally experience myself as “sick” most of the time. And yet I write about Gaucher disease regularly. I represent a patient perspective. People may read my words expecting someone whose illness is always front and center in their life.
There are certainly people with Gaucher disease who face far more severe complications and limitations than I do. That awareness is always in the back of my mind when I write. It can create a strange kind of guilt, almost feeling “too healthy” to speak about the disease publicly. But I’ve realized that this experience is also part of the reality of chronic illness.
Not every rare disease story looks dramatic from the outside. Sometimes disease management looks like stability. Sometimes it looks like remembering an infusion appointment while simultaneously thinking about grocery lists and work deadlines. Sometimes it looks like living an ordinary life while carrying something invisible in the background. And maybe that invisibility is part of why it matters to talk about it.
I think there is also something emotionally complicated about adapting well to illness. After enough years, the unusual becomes routine. You stop constantly questioning it. You stop comparing your life to what it “would have been” otherwise. The disease folds itself into the structure of everyday life so thoroughly that sometimes you forget other people would see it as significant.
Until an infusion day comes around again, that is. Or a scan. Or a specialist appointment. Or a reminder about bone density. Then it briefly comes back into focus.
I used to think that in order to “count” as someone living with chronic illness, you had to be visibly sick all the time. But I no longer think that is true. There is also validity in the quieter experiences: in the people whose diseases are controlled, managed, stabilized, or mostly invisible.
That does not make the disease unreal.
If anything, I think it shows how complex chronic illness can be. Sometimes, surviving it doesn’t look dramatic at all. Sometimes it simply looks like building an ordinary life around extraordinary circumstances so gradually that, eventually, they start to feel ordinary, too.
Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
