Living with a chronic disease can affect your social life. But even if pulmonary alveolar proteinosis (PAP) may set limits in your everyday life you can still have an active social life. It is a matter of finding a way to keep up with your friends without exhausting yourself too much.
Even if you use oxygen all the time it is possible to get out of the house and meet up with friends. You can get many devices to transport your oxygen easily and discretely, eg. in an oxygen handbag.
You can also choose to meet with friends at home if leaving the house is too exhausting for you. Going out for social arrangements or having friends for dinners are something that most people do, and it is a great way of maintaining a social life which can have a direct impact on your wellbeing.
Strong relationships contribute to a long, healthy and happy life. Many studies show that social relations between human beings are vital for our wellbeing. According to the University of Minnesota, research shows that healthy relationships can help you:
On the other hand, low social support is linked to negative health consequences such as loneliness, depression and a higher blood pressure.
Hence, the reasons for maintaining and nursing your friendships are plenty. It does not have to mean that you can only stay happy and healthy if you have a vast amount of friends. It is not so much the quantity as the quality of your friendships that counts.
The better you describe what consequences PAP has on your everyday life the easier it is for your friends to understand what the disease is all about and how it impacts your life. Like yourself your friends – and family – also need to know how to cope with the illness in their everyday lives. Do you need any kind of help? Are there things that you cannot do? What can they expect from you? Sometimes friends and family find it difficult to understand that you are feeling weak. You are the only one who can feel what is going on in your body. That is why it is a good idea to tell them how you are feeling.
15-year-old Julie who has PAP has told everyone she knows about her disease:
It has made it easier for my friends to understand and accept why I sometimes leave school during classes. They also know that I cannot always follow their pace, but as long as they walk slowly or we can sit on a bench now and then I will be fine
35-year-old Jacqui also talks openly about PAP with her friends:
My friends know not to call me before 11 o’clock in the morning. They know that the mornings are difficult for me and that I need time and peace to get hold of myself before I am able to talk to my friends.
But how do you explain a disease that few people know anything about and that you often cannot see by looking at you?
It may work to keep it simple: PAP is a rare lung disease that makes it hard for you to breathe, so sometimes you don’t have energy for anything else.
The more concrete you can exemplify what this means for your everyday life the more likely it is that your surroundings will understand and be able to help you when needed.
Download folder about PAP for patients or relatives [de to foldere]