An important message to fellow PNH patients: You have permission to rest
Your body is working harder than most people realize
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One of the biggest lessons that paroxysmal nocturnal hemoglobinuria (PNH) has taught me wasn’t about medicine or lab results. It was about rest.
For years, I viewed rest as something you earned. If I finished my work, cleaned the house, ran errands, and took care of everyone else, then maybe I could sit down for a while. Before my diagnosis, that mindset worked well enough. After PNH, though, it became one of my greatest struggles.
Living with a rare disease doesn’t come with a pause button for everyday responsibilities. Bills still have to be paid. Families still need you. Careers continue moving forward. The world doesn’t slow down simply because your body does.
So I pushed. I pushed through symptoms like fatigue. I pushed through brain fog. I pushed through days when every part of me wanted to stay in bed. Sometimes I wore my determination like a badge of honor, believing that asking less of myself somehow meant I was giving up. The truth was exactly the opposite.
Experts at hiding how we feel
The more I ignored what my body was trying to tell me, the harder it became to recover. I wasn’t proving my strength — I was borrowing energy I didn’t have.
Learning to rest wasn’t easy because guilt often came with it. I worried people would think I was lazy or unreliable. Sometimes I even questioned myself. If I looked OK, was I really tired? Was I doing enough? Could I just push a little harder?
Those thoughts are common when you live with an invisible illness. Many of us become experts at hiding how we feel, even from ourselves.
Over time, I realized that rest isn’t quitting. It’s part of treatment and healing. Just like taking medication, attending appointments, or eating well, allowing my body time to recover is an investment in my health.
Now, I try to listen before my body has to shout. Some days that means taking breaks between tasks. Other days it means saying no without explaining myself. It means understanding that protecting my energy today may allow me to enjoy tomorrow.
That shift has given me something I didn’t expect: freedom.
Freedom from constantly comparing myself to healthy people. Freedom from feeling guilty for having limitations. Freedom to celebrate what I can do instead of dwelling on what I can’t.
PNH has certainly changed my life, but it has also changed the way I define strength. Strength isn’t ignoring your body’s needs. It’s having the courage to honor them.
If you’re living with PNH and you’ve been carrying the weight of guilt every time you need to slow down, I hope you’ll remember this: Your body is working harder than most people realize. Rest is not a reward for doing enough. It is a necessity, and you deserve it without apology.
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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