My mantra for a flare is ‘It’s OK not to be OK’

Sometimes rest and recovery are the most important tasks of the day

Marisa Zeppieri avatar

by Marisa Zeppieri |

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If you have a chronic illness, I imagine you’ve experienced a moment of guilt at some point because you weren’t able to get out of bed due to a flare or other ongoing symptoms. I even bet you’ve felt that way more than once.

I’m more accepting today of the moments when lupus forces me to stay in bed, as I know it’s my body’s best chance to heal. But it’s still a difficult reality to absorb. The last time I had to do it was during a horrible summer flare.

Summers are the worst time of the year for me. After stress, sunlight and heat are two of my biggest triggers. This year, I had to contend with a hot summer, a move halfway across the country, and full-time caregiving to my mother. For weeks, I experienced an uptick in pain, fatigue, and other symptoms. Sores and rashes broke out on my body, and I had trouble getting out of bed. I felt exhausted.

Against my better judgment gleaned from decades of experience with lupus, I kept pushing myself because it was a demanding season of life. Moving trucks weren’t about to wait for my flare to back off, and my mom’s surgeries and other needs couldn’t be put off any longer.

Eventually, though, I wound up in the emergency room with a major flare and then in bed for about eight weeks. No matter how much I tried to outrun it, life — and lupus — stopped me in my tracks.

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The unpredictable waves of pain, fatigue, and emotional turmoil that lupus can bring can be overwhelming at times. I felt so guilty over the summer, but that mood swung in the opposite direction as I reminded myself that my body was hurting, and it was OK if I needed to stop everything to get better.

This realization is something I want to remind my fellow warriors: It’s perfectly OK not to be OK!

We aren’t robots, and we don’t have to put on a smile and a brave face 24/7. The reality is that the constant societal pressure to always appear strong, positive, and unshakable is unattainable, frustrating, and harmful to our mental well-being.

We’ve all played this game at some point, telling those around us that we’re OK when we aren’t. We smile because we don’t want to worry or annoy anyone. But I believe our strength and character shine more when we allow ourselves to be vulnerable and authentic. We can say, “You know what? I’m really struggling right now.” Or, “I’m having a terrible flare, and life has slowed significantly while I get stronger.”

Midway through my summer flare, my frame of mind shifted. Instead of feeling guilty and beating myself up every minute, I reached out to my family and explained that I needed help. I told them I wouldn’t be able to help with certain things for at least a few weeks. And guess what? Life went on, and everyone survived.

People stepped up to help, or they figured out things on their own. And everyone made it through — all without me showing up.

I keep thinking about the safety presentation on airplanes, when flight attendants remind us to put on our oxygen masks before helping others. A similar message can apply when chronic illness knocks us down. In those instances, we need to prioritize rest, or “me time,” while we devise a plan to protect our well-being. This process allows us to engage more fully in the life around us when we’re better, and then we can help others.

Looking back at my summer hospitalization, I should’ve asked for help sooner. I should’ve shifted things around on my schedule to plan for days of rest. And I should’ve reached out to my doctor at the first sign of worsening symptoms.

I also learned that managing a chronic illness is hard enough without feeling guilty about it. Some days I just won’t be OK, and there’s no shame in that. On those days, I plan to rest, listen to my body, and remind myself that I’m allowed to have bad days.

Life can always begin anew tomorrow.

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, and are intended to spark discussion about issues pertaining to lupus.


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