4 steps I’ve taken for getting through the holidays with PNH

Honesty, positivity, and balance help, as does moving outside my comfort zone

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by Brandi Lewis |

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The holidays are filled with joy, happiness, love, togetherness, and so many warm, fuzzy feelings. But I wasn’t feeling any of them at the beginning of my health journey and had a hard time getting into the holiday spirit. I didn’t feel happy, joyful, or full of life. Instead, I felt, sad, annoyed, and frustrated.

When I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I spent many days shut off from the outside world. Even getting a common cold would guarantee me a long night in the emergency room. If I was lucky, I’d be hospitalized for a day or two. It was best to be isolated.

When the holidays would roll around, I’d grapple with how to spend time with family and friends. If asked how I was doing, would I answer truthfully or just stick to my everyday response of “I’m fine”? Would I follow the rules and wear a mask? Or would I live it up and feel normal for a few hours without one? These questions may not seem like much, but they were real concerns about how to have a joyful time when I wasn’t feeling so joyful.

A major symptom of PNH is fatigue, and boy, did I feel severely tired when socializing. I’d occasionally have to take breaks, sit down, or catch my breath. Being in a room with others was sensory overload and led me to feel exhausted.

If I was going to survive the holiday season, I knew I had to come to grips with my feelings. I came up with four approaches that helped me push through while trying to stay true to myself.

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First, I learned not to force my emotions, to instead be honest with others. Being around family was great, but it helped me sometimes to step away for a minute to collect myself or answer a question that had made me feel bad. I felt better when I permitted myself to feel my feelings.

Second, I had to remember that even in my worst times, everything wasn’t negative. My friends and family weren’t out to get me. They wanted to support and help me. Remembering their texts, phone calls, and gifts helped me know I wasn’t alone. This important reminder pushed me through the tough holidays when I wasn’t feeling my best.

Third, since I never want to stay complacent and stuck in my ways, I learned to test myself by doing one thing outside of my comfort zone. I’ve always stuck to the idea that being uncomfortable meant I was growing. I became comfortable with being uncomfortable.

To get out of my negative frame of mind or isolation, I’d test myself. I’d do that by finding someone I trusted, who understood my illnesses, to confide in about how I was doing. I don’t open up easily, so this helped me know it was OK to be vulnerable.

Fourth, I found that being stuck in a sad frame of mind made it easy for me to make excuses for not attending an event. Getting out helped me to feel somewhat normal. But I also knew to cancel events that I didn’t want to attend so I could rest. Balancing time with others and time to rest during the holidays helped me avoid feeling guilty or lazy.

There are many hurdles to jump during the holidays when you’re sick. To get over them, we need to take it easy, get outside our comfort zones, and stay true to our feelings. You got this!

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.