Start small

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.”

Be honest

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.”

Speak up

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?”

Share updates

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.”

Download these tips here.

You can find shareable visuals and a wallet card to help explain PNH here.