Rediscovering the joy of "yes"
Living with PNH might mean you have to say "no" more than you’d like – to friends, to opportunities at work, to hobbies you once loved. But what if you could say "yes" more often?
Scientists point to six related elements that contribute to optimal health: emotional, occupational, physical, social, intellectual, and spiritual. The symptoms of PNH may impact all of these, but developing a plan that considers what’s most important to you can be the first step to more “yes.”
Emotional health, or the awareness of feelings and the ability to cope with stress and approach life optimistically
The ups and downs of PNH and the impact of symptoms on a person’s sense of self can challenge emotional health.
Your ability to contribute your unique gifts, skills, and talents to work that is both personally meaningful and rewarding
PNH symptoms can make it more difficult to achieve your ambitions, impacting your occupational wellness.
Physical well-being, or how your body feels
You can help enhance this area through healthy nutrition, exercise, regular medical care and listening for your body’s “warning signs” when something isn’t right.
However, the symptoms of PNH – like fatigue, headaches and trouble breathing – can challenge physical well-being.
Your social life, or your role in your community, including family, friendships and your ability to connect with other people with PNH
The unpredictability of PNH symptoms can make it more difficult to build and maintain relationships and can challenge your social well-being.
Pursuing interests, or the ability to learn new things, feed your curiosity, acquire new skills and explore the unknown
PNH symptoms can make it hard to commit the time and energy needed to enhance your intellectual wellbeing.
Finding a sense of purpose, or feeling your life has clear direction and meaning
Many people with PNH find that the daily symptoms can change how they see themselves and their role in the world. This can impact spiritual wellness.
Use this tool to explore how PNH is affecting you.
Tips from an expert
Professional health and wellness coach Leslie Thorpe shares how different aspects of wellness can be impacted by PNH, and reviews strategies to help you get more out of life.
Say “yes” to life
The six dimensions of wellness
Go from overwhelmed to empowered
Tools to help you practice
Leslie Thorpe was compensated by Apellis Pharmaceuticals, Inc. for the time required to develop these resources.
Hear how people living with PNH advocated to get more of what they want in their lives.