How to self-advocate during PNH doctor appointments

Last updated Aug. 6, 2025, by Brandi Lewis

After receiving my diagnoses of aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), my parents accompanied me to my first appointment because I felt nervous and hopeless.

Tucked under my mom’s arm was a white notebook labeled “Brandi’s Binder.” When she opened it, I saw lined paper with numbered questions in her handwriting. After my doctor explained the disorders, my mom wasted no time in asking those questions.

Watching how delicately yet passionately my mother asked questions and took notes inspired me to learn to do the same.

Life with PNH would be a long journey, and my parents wouldn’t always be there, so I had to learn how to advocate for myself, work closely with my medical team, and ask the hard questions.

If you have PNH, you must communicate openly with doctors about how you feel — you shouldn’t make them guess or assume.

Cultivating the courage to speak up for what you need takes time and practice, but it’s vital that your wishes and needs are honored in the healthcare space.

Preparing for self-advocacy

First, understand what you want from your healthcare journey by asking yourself some important questions:

• What treatment priorities do I refuse to compromise?
• What goals or dreams of mine do I want my medical team to take into consideration when creating my treatment plan?
• What role do I want my loved ones to play in my care?

Write down anything that’s important to you, whether that’s being with your family during treatment, or having children in the future, for example. You never know what aspects of your life PNH will affect, so it’s best to be thorough in your assessment.

Play detective by making a daily list of symptoms and researching your condition. Listening to your body and tracking any changes, whether negative or positive, can help you understand the triggers related to symptoms or side effects.

Bring the log to your next doctor appointment to discuss.

Doing this work beforehand and having everything written down is important for demonstrating that the potential symptoms, side effects, or triggers aren’t fleeting thoughts or theories, but are actual concerns or ideas that need to be taken seriously by your specialists.

Navigating discussions with your doctors

Taking inspiration from my parents’ initial conversation with my doctor, I approach conversations with my healthcare team with prepared questions. The conversation’s tone should be kind and confident to show you’re an active participant in your care.

• If you don’t understand something, don’t wait to go home and research. Ask for clarification and try to convey to your doctors that you expect them to educate you in the future.
• If you’re unsure about the long-term effects of symptoms or treatment side effects, ask to go over them together. Doctors can’t consider every angle of a plan, but you can help them process possibilities by talking about them together.
• When discussing treatment options, request to be told all available options and be given time to research before making a decision. It’s too big (and often, costly) of a commitment to decide in haste.

When speaking up was hard, my parents would remind me — during the appointment or before — of questions I wanted to ask: “Don’t forget to ask him about …” That was helpful, especially since brain fog is common with PNH.

Those in my support system have ensured that all my questions, especially the tough ones, were answered by following up after the appointments. Similarly, you should rope in support figures who can remind you of your needs, boundaries, and desires.

Creating a positive relationship

It’s important to approach your clinic visits as opportunities to grow in teamwork: Think through and even ask your providers how you can be a contributing member of your healthcare team rather than only a recipient of care. Adopting this attitude can elevate your role in future decision-making.

Some other ways to strengthen your relationship with doctors:

• Ask questions about the way other patients have been treated so you can understand PNH beyond your specific case.
• Proactively foster conversation around new treatment options or clinical trials.
• Listen to how questions are answered by specialists, then in future decision-making discussions, use their language to demonstrate that you’re an active learner.

A positive bond with doctors is not everyone’s reality. If you ever feel uncomfortable about an upcoming meeting, ask someone in your support network to accompany you. Not only can the presence of a support figure strengthen your resolve and ease anxiety, but debriefing the appointment afterward with that person can validate your feelings. Sometimes another perspective might even challenge you to approach the situation differently.

If difficulties with any members of your healthcare team progress and persist, reach out to other healthcare staff members, like social workers or PNH nonprofits, for assistance. You also could ask other patients if they had positive outcomes in similar situations.

Advocating for myself has now become second nature. I feel more comfortable in appointments — confident that I have a voice, and that I know how to use it. If you follow my advice, this could describe you, too, and that’s my hope for you.

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.