Talking about your PNH
Communication is key
PNH is a relatively unknown condition, which means that you may have to explain it to friends, family, neighbours, colleagues, as well as your employer. This may be difficult, but it will help those around you understand how best to support you.
It can be helpful to be open and honest when someone asks how you’re feeling, so they can better understand your PNH and the impact it has on your life.
It may also be helpful to let those around you know as and when your needs change, as it will help them feel connected to you and it will allow them to provide the support you need.
Your family and friends might be able to relieve some of the pressures caused by your PNH, so it’s important to ask for help when you feel you may need it.
Try to be very specific, as your needs will change over time, but this won’t always be immediately apparent, even to those close to you.
The members of your healthcare team are your personal advocates for all health issues.
A good relationship with your healthcare team may be important for a successful management of your PNH. Every appointment and conversation is important. Preparing for your appointments may take some time but it can help the team provide you with the best support.
Communicating with an employer about a chronic health condition which may require frequent treatments can be stressful.
It can be helpful to be open and honest about the challenges that your PNH presents and any extra time and support you might need at work.
Remember that what you disclose about your illness - and what you don’t – is your decision.