Written by: Nicole McCoy
Living with a rare illness like Familial Chylomicronemia Syndrome (FCS) often feels like living in the in-between. In-between appointments and answers. In-between feeling “fine” and feeling completely overwhelmed. In-between the person you were before symptoms appeared and the person you are still growing to be.
One of the hardest parts is invisibility. Because my illness is rare, most people have never heard of it. There is no quick explanation, no visibly seen symptoms, no shared understanding. When I say I am tired, it does not sound different from anyone else saying they did not sleep well. When I cancel plans, it can look like a choice instead of a necessity. From the outside, I may seem okay—but inside, my body is like a roaring river of uncertainty.
There is loneliness that comes with having a rare illness. Not just feeling unwell; it’s feeling unrelatable. Support groups are small or nonexistent. Medical professionals do not always have clear answers or any answers at all. Sometimes it feels like I’m explaining my illness for the hundredth time while still not fully understanding it myself. That uncertainty is exhausting. You start to question how much energy you spend educating others when you are already running on empty. You question whether what you are going through is a consequence of your own choices or is it really a legitimate illness.
Emotionally, it is complicated. There’s grief for the lifestyle you lost, frustration at how long things take, and fear about the future. But there is also growth. Living with uncertainty teaches patience in ways nothing else can. It deepens empathy, not just for others with illnesses, but for anyone carrying something unseen. You learn that everyone is fighting something, even if it looks different from your own battle.
Having a rare illness is not just about being sick, it is about constant unknowns and adaptations. It is making plans with a mental question mark. There is always a question whether you can fulfill plans and obligations or not. It is balancing hope with realism. It is wanting others to believe you without having to prove your pain.
At the same time, a rare illness reshapes how you see the world. You become deeply aware of your body, its limits, its warning signs, its resilience. You learn to listen closely, because ignoring symptoms has consequences. Rest stops being laziness and becomes survival. Small victories, like a good day or a completed task, are more significant than big milestones.
Living with a rare illness is not a story of constant strength, but of perseverance. Some days are heavy, and some are light. Most days exist somewhere in between. Always learning, adjusting, and wondering what the future holds.
Through all the uncertainties, fears, pain, and unknowns, my family and my faith in God has been the steady ground beneath me. When answers did not come and plans fell apart, they remained constant. I did not always understand what my body was doing or where the path ahead would lead, but I learned that I did not have to understand everything and had to trust God. In the emergency rooms, the hospital bed, the long nights, and the moments when I felt completely alone, my family, and God was present in ways that are undeniable.
Living with a rare illness has taught me that faith is not about having all the answers or even certainty. It is about choosing trust in the middle of uncertainty. God did not promise an easy journey, but He promised to walk with me through it. And He has. Through every fear, every unanswered question, and every unknown, His faithfulness has carried me through the moments in-between and moved me forward to a hope filled future-one day at a time.
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