Why I no longer feel guilty about seeking a medical second opinion

Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things — but one lesson I didn’t expect to learn was how complicated it can feel to ask for a medical second opinion.

Let’s be real: There’s a stigma around it. Whether we say it out loud or not, there’s this unspoken idea that if you ask for another medical opinion, you must not trust your doctor. That you’re being “difficult” or “dramatic.” When you live with a rare disease like PNH and you finally find a specialist who understands your condition, the last thing you want to do is upset that relationship.

The first time I considered seeking a second opinion, I’d been on treatment for years but had started hearing about newer options. I wasn’t unhappy with my care at all, but I was struggling on my initial treatment. I was curious and, honestly, a little anxious about the future. But I kept talking myself out of it because of that lingering fear: What if my doctor gets offended?

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But here’s the truth I want every PNH patient — and really anyone with a chronic illness — to know: Seeking a second opinion is not an act of betrayal, but a form of advocacy. You are not being ungrateful, untrusting, or paranoid. You are being responsible, engaged, and empowered.

PNH doesn’t follow a script. Some of us struggle with fatigue and hemolysis; others face clotting issues or bone marrow failure. There’s no “standard” path. That’s why hearing from another expert can be so valuable — especially when it comes to treatments like Soliris (eculizumab) or Empaveli (pegcetacoplan), or even emerging therapies still in clinical trials.

When I finally found the courage to bring it up, my hematologist surprised me in the best way. He didn’t act offended or distant. Instead, he said, “I completely support this. You deserve to feel confident in your care, and I’ll help however I can.” That moment crushed every fear I had about being seen as difficult. It was proof that the stigma only exists if we let it.

In the end, the second opinion didn’t drastically change my treatment plan, but it changed how I felt about it. I came back feeling more informed, more in control, and more at peace.

So if you’re sitting with that quiet tug of uncertainty, please listen to it. Don’t let stigma or guilt talk you out of asking for what you need. Second opinions aren’t a sign of mistrust — they’re a sign that you’re showing up for yourself.

If you’re considering a medical second opinion, check out these resources from the Aplastic Anemia and MDS International Foundation and the Cleveland Clinic.

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.

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