3 tricks to staying positive since my PNH diagnosis

One bit of advice: Don't deny the truth, because living in unreality won't help

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by Erin Fortin |

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Choosing a positive lifestyle after being diagnosed with my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), has not been easy. I went into shock immediately after hearing the news and couldn’t see how my life could move forward, much less in a positive light.

After managing this mindset change, I feel like the weight has been drastically lifted off my shoulders. Following are my three tricks to staying positive.

1. Allow bad days to come

As much as I love to daydream about the happiest life I could imagine, such thoughts put me in an unrealistic mindset. Trying to stay positive every second of every day would be exhausting because it’d be forced.

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Instead, I’ve learned to accept bad days and allow them to come. They could be filled with PNH symptoms or feelings of depression, weighing down my mood and taking the wind out of my sails. But since I’ve expected such days, they’ve stopped having as much control over my happiness.

Because the disease is unpredictable, I can’t determine when the bad days will come. But knowing they’re a possibility takes away the disappointment when they happen.

2. Embrace the negative feelings, then let them go

When the bad days do come, I inevitably go into woe-is-me mode, feeling sorry for myself and wishing I didn’t have PNH. The harder I’ve fought these feelings, the easier it’s been to give up.

Instead, I’ve learned to lean into and embrace these feelings. I give myself a moment to feel negative, let out a big cry or scream, and then move on. Instead of putting my energy into fighting the negative thoughts, I let them in and then shift that energy to focus on being positive.

Taking a step backward, perhaps paradoxically, can give me the fuel to move forward in a positive manner.

3. Surround yourself with positivity

Finding support is a vital part of feeling positive, and I’m so grateful for my support system. But I’ve found it most helpful when I give my backers some feedback on how they can support me.

Sometimes loved ones try to offer comfort, but the words they say can be triggering. For example, comments about PNH being temporary aren’t realistic and only cause me more sorrow. To help my husband, I’ve reminded him how much I’ve overcome and grown in my health journey. That’s been useful feedback.

I’ve been complimented by family, friends, and other patients on my positivity, but there are times I want to respond by telling them about all the times I haven’t been positive. That may be partly because today’s influencers and social media give many, including myself, unrealistic views of what living a positive lifestyle is like. I’ve had just as many lows as highs.

There’ll always be setbacks when trying to remain positive, but incorporating these tricks into my daily life has at least given me a place to start.

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.