Facing a chronic condition like PAP together can bring you and your relative even closer together. However, there are also challenges to overcome and pitfalls to navigate – and the best way to do this is through communication. According to Marianne Obed Madsen who advices lung patients and their relatives in the Danish Lung Association, it is only natural that your relationship is affected when a chronic lung disease like PAP enters your life:
The relationship is put under pressure, and this can enhance both the positive and the negative aspects of your relationship. In connection with rare diseases like PAP, the diagnosis process is often a long and fatiguing journey, so when your relative finally gets the diagnosis, you may both be exhausted already. It is important to remember that it is only natural, and if you have a bad day, it doesn’t have to mean that your relationship is not strong enough. It just means that you are going through a difficult time due to the disease.
Trying to guess what your relative wants and needs from you is often not the best approach. Although you may have known each other for a long time, you cannot read each other’s minds. And if you try, you may end up in a situation where you try to give your relative space when, in fact, what he or she really needs is for you to be more involved. Or maybe you try to help by taking on a lot of responsibility and tasks that your relative would actually rather you didn’t interfere with.
Instead, you should have an open and honest talk about how your relative would like you to help and offer support in your daily life together and in situations with severe breathlessness, etc.
Ask your relative to think about these three questions and write down the answers.
This gives you a good starting point for talking about how you can support your relative in the best way.
Talk to each other. It may seem obvious, but many forget it. It is important to be open and honest about how both your relative and you are feeling. For instance, in a marriage, the distribution of roles often changes when one is diagnosed with a chronic disease like PAP. It is important to acknowledge and talk about these feelings.
Some relatives of people with chronic lung diseases also experience that the patients do not involve them and maybe even hide symptoms that can indicate that the disease is progressing in an attempt to spare them. Likewise, as a relative you may be reluctant to talk about problems you are experiencing at work, etc. because you think they seem trivial compared to what your relative is going through, or you don’t want to burden your relative further.
Every relationship is unique. Some people prefer to be informed and involved a lot because it makes them feel useful and close to each other, while others prefer otherwise. Therefore, it is important that you have an open and honest talk with your relative about your views on this.