Revealing the invisible: How to explain PNH’s hidden symptoms

Last updated Sept. 2, 2025, by Susie Strachan
✅ Fact-checked by Joana Carvalho, PhD

 

Paroxysmal nocturnal hemoglobinuria (PNH) can bring about invisible symptoms that are hard for others to recognize, such as fatigue, brain fog, pain, and headaches.

These symptoms may quietly affect how you work, socialize, and manage daily tasks, even if you look healthy from the outside. And because they’re invisible, they may sometimes be misunderstood, overlooked, or dismissed, even by those closest to you.

Finding ways to describe these hidden symptoms in clear, relatable terms can help your loved ones better understand what you’re going through and offer the support you need.

Why subtle symptoms matter

Symptoms that aren’t as obvious can quietly affect your quality of life, sometimes leaving you uncertain about what you’re experiencing and making conversations about your illness more difficult.

Recognizing the importance of these less visible symptoms is a key step toward getting the help you may need. For instance, you might need assistance with:

  • keeping up with lessons or taking tests, if fatigue, pain, or brain fog make focusing difficult
  • meeting deadlines at work, or explaining your need for breaks or flexible work arrangements
  • managing day-to-day tasks at home, including caring for yourself or your children when fatigue or pain flare
  • handling everyday activities, such as standing in lines or using public transportation, when they become challenging

Explaining PNH symptoms to others

Opening up about PNH isn’t always easy when your symptoms are hard to describe or are invisible. Keeping your explanations simple and honest may help others understand what you’re facing.

Try using everyday language, as words like pain, exhaustion, or discomfort may resonate more than medical terms. Consider:

  • using analogies, such as “It feels like I’m running on empty, no matter how much I rest”
  • sharing examples of how hidden symptoms affect your life, whether that’s missing work, canceling plans, or struggling to keep up with daily activities

It’s also helpful to mention that your symptoms may worsen during times of stress or illness, even if you look fine from the outside. This openness can help build empathy and support among those close to you.

Practical steps to aid your care

Taking an active role in managing your health can help. To better monitor your less obvious symptoms and communicate your needs, consider:

  • keeping a daily symptom diary, noting when and how hidden symptoms occur
  • bringing this record to medical appointments to help ensure symptoms are not overlooked
  • discussing adjustments to your treatment plan with your healthcare team if symptoms become more disruptive
  • including family members, close friends, or caregivers in medical appointments, as having someone else present can help you share information about your symptoms more clearly and ensure your concerns are heard
  • asking for second opinions or specialist referrals if your concerns aren’t being addressed

Managing PNH’s less obvious symptoms can sometimes require extra support. Whether you need help with daily tasks or coordination of care, involving caregivers or loved ones can help ensure your needs are met.

Reaching out for help

Sharing your story, advocating for your needs, and connecting with others may make living with PNH feel more manageable.

A good place to start is with your regular doctor, who can coordinate referrals and arrange further assessments tailored to your specific symptoms. Your healthcare team can also point you toward local support groups or link you with others who have walked a similar path.

Hematologists (doctors who specialize in blood disorders) often have the most experience with PNH and can guide you toward appropriate treatment options.

Support also extends beyond the clinic. Patient organizations and online communities can offer practical advice, reassurance, and a feeling of connection. Groups that may be helpful include:

Finally, your mental health is just as important as your physical health. A professional counselor or mental health therapist can assist you in coping with the anxiety, stress, or frustration that may come with subtle or hard-to-recognize symptoms.

By reaching out and building a circle of support, you can take steps toward understanding and managing the subtle challenges of PNH.

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.

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