Psychological Impact
You may feel you’re on a roller coaster of emotions
Being diagnosed with a chronic disease can feel like a blow in the stomach. It is normal to experience a range of emotions in the wake of such a diagnosis. You may experience denial, bargaining, anger, fear and sadness. You may feel you’re on a roller coaster of emotions — accepting one day, and angry the next. It may help to remind yourself that these feelings are normal, and will likely ease with time.
Why me?
To some extent, we all have perceptions of and expectations for how our life should unfold. Being diagnosed with pulmonary alveolar proteinosis (PAP) may interfere with this plan. You will most likely have to readjust your plan to fit the new life with a chronic and serious disease. This readjustment takes time and can affect you in many ways both physically and mentally.
No right way to react
Having to adapt to the new situation requires emotional energy and for many people it poses a mental challenge. You may ask yourself questions like: “Why did this happen to me?” or “Did I cause this?”
It is important to remember that individuals are unique and no one reacts exactly the same way. We have different experiences and different ways to handle emotional strain. Some people benefit from support from their relatives, while others like to cope on their own. There is no right way of reacting.
In the beginning you may focus all your energy on the disease and your life may be all about the disease. But gradually, this stern focus will ease and the disease become a part of your life along with many other aspects.
Feeling afraid
You may react by feeling angry, anxious or sad. These are normal reactions. The familiar and predictable foundation is gone and your mind may be busy thinking about the consequences of the disease. Some may from time to time experience being afraid to be alone or to go out alone. Fear of losing control can also occur.
Try to find small things that you can enjoy every day, and set realistic short-term goals for yourself. Even small goals such as a visit to a park or museum, or a phone call with a close friend, can help you make the most of each day.
Feeling angry
Being ill creates unpredictability in life which may cause you to feel anger from time to time. The anger may be directed against fate, against yourself, or against family and friends. Although such anger can be irrational, it is important to recognise and accept that the feeling may occur. Your emotions may change from one moment to the other.
Feeling loss of control
You can also experience the feeling of losing control of yourself or not being able to recognise yourself. Thoughts can be unstructured, and you may find it difficult to concentrate and have the overview. Many will recognise it as “excessive thoughts” with many concerns running in circles without finding a solution / conclusion.
It is essential that both you and your family realise that it may take time before your everyday life returns to normal and a new life plan takes form.
5 steps to a good everyday life with PAP
- Be open and focus on what works for you – we are all different and there is no ‘right’ way of reacting
- Ask for help when needed – your friends and family cannot read your mind so express your feelings and needs to them
- Accept your limitations to be able to focus on your options
- Make use of other people than your partner for support, for example internet groups
- Ask your relatives to be patient with you in the months after the diagnosis
This website is sponsored by Savara Pharmaceuticals
