Am I still sick, or have I just forgotten what healthy feels like?
I sometimes ask if I've just become accustomed to feeling unwell
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One of the toughest questions I’ve faced with paroxysmal nocturnal hemoglobinuria (PNH) isn’t if my treatment is working. It’s whether the symptoms I continue experiencing are left over from the disease or whether I’ve simply become accustomed to not feeling well.
When you live with a rare chronic illness for years, sickness can become your normal. Fatigue, brain fog, headaches, aches, and days when your body feels heavier than it should can slowly weave themselves into everyday life. Over time, you stop comparing yourself to the person you were before your diagnosis, because that version feels so far away.
I was diagnosed with PNH nine years ago. Since then, treatments have improved tremendously, and I’m grateful for the progress that has allowed me to live a fuller life. Yet there are still moments when I wonder if my lingering fatigue is from PNH and my body is still healing from years of damage? Have I simply forgotten what it feels like to wake up completely refreshed?
Healing isn’t a straight line
I think many people living with chronic illnesses ask themselves these same questions. We become experts at adapting. We push through workdays, family responsibilities, appointments, and daily life. We celebrate improvements while quietly managing symptoms that others may never notice. Sometimes we become so skilled at coping that we fail to recognize how much we are still carrying.
The reality is that both things can be true. Symptoms may linger even when treatment is helping. Our bodies may need time to recover from years of disease activity. At the same time, we may become accustomed to functioning at a level that others would consider difficult. What feels normal to us may actually be a sign that something still deserves attention.
This is why self-advocacy remains so important. It’s OK to tell your doctor something still doesn’t feel right, even if your lab results look better. It’s OK to ask questions, seek second opinions, or discuss quality of life concerns. Treatment success isn’t measured only by numbers on a report; it’s also measured by how you feel and how fully you can live your life.
Living with PNH has taught me that healing isn’t always a straight line. Sometimes progress is obvious and sometimes it’s subtle. But I’ve learned to give myself grace when my body reminds me of everything it has endured.
Whether the symptoms are leftovers from the disease or simply part of a new normal, they are real. They deserve to be acknowledged. And most importantly, they should never stop us from pursuing the best possible quality of life.
Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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