Redefining ‘Normal’

There are two distinct types of normal that exist in my life with lupus, and their distinctions are incredibly important. There is the type of normal that accompanied learning to live with lupus, which I would refer to as “lupus normal.” This includes fatigue, brain fog, and endless lifestyle modifications. And then there is what I would call “average normal.” By that, I mean the kind that anyone who isn’t chronically ill can relate to with ease.

My lupus diagnosis was a hard pill to swallow. It meant there were new boundaries that needed to be discovered and adhered to for the sake of my body. I was forced to learn of a new normal — the “lupus normal.” I’d be lying if I didn’t admit to constantly struggling with defining what that means, even to this day. But learning to accept even a vague concept of what “lupus normal” is meant that I could always refer to a set of realistic expectations.

Defining these terms comes with pros and cons. One of the main negatives to outlining the difference between these two is that it can lead to comparisons that are both unhelpful and unfair. By that, I refer to comparing myself to someone who doesn’t live with any of the struggles of invisible illness, and beating myself up over the fact that they seem more active, more successful, or more motivated than I do. But a definite positive is being able to clearly identify moments where I really ought to cut myself some slack.

I admit to being incredibly hard on myself. There are a few things I truly despise about living with lupus, one of which is the constant feeling of fatigue and how weak it sometimes makes me feel. I hate the days when all I’ve really done is mosey about the house, and yet somehow I still manage to find myself exhausted. And it’s in these kinds of moments that comparing myself to someone’s “average normal” can be very hurtful to my state of mind.

But then there are the good days, when I’ve worked a solid café shift in the summer heat and somehow still managed to motivate myself to drive across town to the gym. I’ll get to the gym and start a workout only to feel not only tired, but also weak. It’s so important for me to remember how much I’ve already accomplished that day; to recognize where I started and that there are very few people — chronically ill or not — who wouldn’t feel the same way in those kinds of circumstances. I’m very good at recognizing when I should push myself further, but it’s much harder to identify when I’m being far too harsh.

I’m so used to being on the back foot because of lupus that my automatic assumption is that I always need to be trying harder just to keep up with everyone around me. But it’s time to start taking a step back more often and recognize the breakthroughs I’ve made regarding both kinds of normal.

Recognizing “lupus normal” is neither a resignation nor a long-term commitment to any specific set of boundaries. “Lupus normal” is a reminder that you’re facing hurdles that most other people won’t have to jump, and it’s more than okay if you don’t have the energy to jump theirs as well.

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Note: Lupus News Today 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 Lupus News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.