How to feel less guilt when PNH leads you to cancel or say no

Have you ever told someone you can’t do (insert activity) because you have a chronic illness? And have you said you weren’t feeling well to get out of whatever you didn’t want to do? And does the guilt then begin to flow through your mind — thoughts of “Am I lazy? Am I being selfish? Should I have just done it?”

Since I’m battling the chronic illnesses aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), it’s tempting to use my conditions to get out of something, and sometimes I do. Many of us may feel that we’re using chronic illness as an excuse and want to change our ways. But maybe it’s more realistic to learn to be OK with our choice.

There have been many occasions when chronic illnesses were my excuse. Even when my reason to say no was valid, I didn’t want to use it because I didn’t want it to be a crutch. I was already known as the sick girl, so the last thing I wanted was to perpetuate that label even more.

I’d try to reason with myself that saying no was OK. That I was justified. I’d fill my time doing other things to prove my excuse was reasonable. The guilty, nervous feeling that I’d be “caught” would send my mind into overdrive. I was spiraling out of control and lost focus on what was important — getting well!

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My illness is real

Is it OK for me to use my chronic illness as an excuse?

To this question, I say yes! It’s natural and human to get out of something we don’t want to do or can’t do because we’re facing a grueling symptom that day. If PNH wasn’t your excuse for saying no, would you offer another reason instead? Or would you say yes to whatever was asked of you?

I experience fatigue from PNH. The National Cancer Institute defines fatigue as “an extreme sense of tiredness and lack of energy that can interfere with a person’s usual daily activities. A person with fatigue may feel weak, worn out, heavy, slow, or run down. They may also have trouble speaking or concentrating, short-term memory loss, and mood or emotional changes.”

Fatigue, to me, is my body telling me that it needs to rest for a long period. Therefore, I usually spend hours lying on the couch watching a good movie or TV show. Sometimes, I can tell my fatigue is worse because I have trouble moving, and simply getting off the couch takes most of my energy.

When I battle this symptom, I’m forced to rest. That means anything I’m supposed to do that day either goes away or is pushed to later. Sometimes when that happens, I’ll feel lazy and like I’m a slob. In those moments, I keep reminding myself that I’m resting, and it’s OK just to be.

Some excuses are actually valid reasons. I’m always learning not to beat myself up and be OK with canceling or saying no. We who have chronic illnesses live a different life, and that comes with challenges. But our way of living is OK; we’re humans trying to make it to another day.

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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