How to cope with the emotional toll of PNH

Last updated Aug. 6, 2025, by Brandi Lewis

Before I’ve even left home, paroxysmal nocturnal hemoglobinuria (PNH) symptoms have me overwhelmed and uncertain about the day ahead: Can I complete all my tasks or will I spend the day resting on the couch due to exhaustion? And if I do make it to work, how will I manage if PNH symptoms flare up during important meetings?

Overcoming anxieties like these demands more than just adopting a bounce-back attitude when things go wrong. We also need the strength to take risks and live confidently.

Strength to weather the storms of PNH comes from resilience formed through a sense of competence, a responsive support team, an empowering self-narrative, and carefully cultivated hopefulness.

Build confidence through self-efficacy

Resilience is built partly through self-efficacy, which is the confidence that you can excel when performing difficult tasks. That sense of competence can empower you to feel you have a fighting chance against PNH.

Train yourself in self-efficacy by:

• adopting a student mindset by deciding to master knowledge of your illness, the science behind it, and any data, history, and symptoms
• participating in health decisions by talking with your doctor and asking questions to support a positive, team-based relationship
• learning how to listen to your body so you can track your symptoms accurately and predict flares.

Strengthen and add support systems

Seek individuals who are open to learning about your illness and how to support you. Instead of simply accepting the support system you have, instruct your team in what you need and consider adding resources or specialists.

• Have open conversations with caregivers and loved ones to let them know specifically how they can support you. You might also proactively answer whatever questions you think they may not feel comfortable asking.
• Research and join PNH support groups to feel less alone. Empathetic support groups can also be key to discovering new coping and PNH management strategies.
• Pay as much attention to your mental health as your physical health care, whether that involves finding a specialist or practicing self-care techniques like meditation and PNH-friendly exercise.

Reshape your story

Sharing your story may help enhance resilience and overall well-being. Crafting your narrative helps you understand how to self-identify and figure out empowering angles through which to perceive your challenges.

Some ways to put this into practice:

• Regularly journal your feelings to process difficult situations that arise during your PNH journey, and to better understand your emotional patterns, such as what causes anxiety and how you tend to cope with it.
• Recognize the challenges you’ve already overcome and consider how they have helped you grow and learn.
• Intentionally reshape the ways you share your story with others, whether by rejecting defeatism, speaking about what gives you hope, or altering your language to redefine the story’s tone.
• Consider publishing your writings for others’ benefit, as I’m doing here. Helping others can form resilience.

Lean into hope

Because PNH involves many ups and downs, it can be easy to fall into an all-consuming negative mindset. You need to be active in countering that mindset.

Try out different tips for generating hopefulness, such as:

• Practice gratitude to remind yourself what is important outside of your illness.
• Celebrate the small wins as a reminder that you are still achieving progress of some sort even amid trying times.
• Be kind to yourself and speak positively about yourself — the tone of self-talk can either intensify or alleviate stress.

PNH can take a tough toll. My hope is that you will respond to that toll with these suggestions and seize traction against the disease. Remember, you are worth fighting for!

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.