PNH is not well known, which means you may have to explain it to friends, family, neighbors and coworkers. Here are some quick tips to help with those conversations:
Give people time to process what you’re sharing by first focusing on the highlights of your story versus each step in your journey.
“This past year has been very challenging for me as a mother.”
Keep it personal
Use “I” statements to help others understand how the disease impacts your life, both logistically and emotionally.
“I have a hard time keeping up with the day-to-day chores.”
When someone asks how you’re doing, tell them. Short, tangible examples can help demonstrate the true impact on you.
“Today’s been tough. I didn’t have the energy to attend a really good friend’s fundraising event.”
Help teach others to be understanding and compassionate by advocating for what you need.
“I’d love to coach my daughter’s soccer team, but would it be possible to assign a co-coach in case there are days I can’t make it?”
Keep others informed as your needs change. This will help them feel connected to you and focus their energies in the most useful way.
“I’m finding myself increasingly tired. and am struggling to get the kids out the door for school in the morning. It would be really helpful if you could take over breakfast prep.”
“I’d like others to know that even though this disease is rare, we are survivors worthy of research and advocacy.”
– Emily, living with PNH
“It’s so hard to explain it without someone feeling bad for you.”
– Person with PNH
“I want more doctors to know the signs and symptoms, so it doesn’t take so long to diagnose.”
– Leslie, living with PNH
“It’s challenging to explain this illness at work and ask for time off.”
– Person living with PNH
“I wish others would understand we get tired without holding it against us.”
– Sara, living with PNH
“A lot of people think we’re healthy, and we are not.”
– Sonia, living with PNH