Tips on how to cope with the diagnosis of a rare disorder

Written for Australian Pituitary Foundation by Lynne Gibbs, MAPS, Psychologist

Once you have received a diagnosis of a rare pituitary condition, there is a number of possible emotions that you may feel, both immediately after the diagnosis and in the longer term.

Some possible emotions that you might feel following a diagnosis of a rare pituitary condition are;

  • Relief: That you finally have an answer to what has been wrong with your health
  • Anger: This could be anger at health care professionals, at yourself, or your religion’s God
  • Fear: Fear often results from not knowing what is going to happen
  • Disbelief: There can be a sense of shock that this is happening to you
  • Loneliness: Having a pituitary condition can make you feel lonely, that no one understands what you are going through. This may also result if your condition is making it hard for you to get out of the house and socialise
  • Loss of Control: All of a sudden it can feel that your life is out of control and you may have to make decisions quickly about things like treatment options
  • Distress: It is very common to feel distress about your diagnosis and others close to you might also feel distressed
  • Sadness: It is very normal to feel sadness, however if this sadness continues in the longer term with other symptoms, it might be a sign of depression

Helpful ways of coping with your feelings include:

Talking to others: This might be a friend or family member or a professional like a GP or psychologist. It is important to find someone to talk to who will really listen to what you are saying and not judge you. It does not help when you talk to someone about your inner most feelings and they say things like you are ‘crazy’ or you do not have the right to feel that way. If you want to find a psychologist in your area, check out the Australian Psychological Society web site at

Join a support group: You will be able to talk to people who are in very similar situations to yourself and hear about how they have coped with similar situations.

Do not let your pituitary condition define you as a person – remember you are more than a medical diagnosis. Think of all the different roles that you have in your life, for example son/daughter, friend, and partner. There is more to you than your pituitary condition.

Taking time out: With some emotions, like anger, you might need to take some time away from the situation to let yourself calm down before you can go back and calmly discuss the issue.

Distraction: When we are consumed with our emotions we might need something to distract ourselves so we can calm down. Examples include listening to music, tasks around the house, and calling a friend.

Humour: Could be called a form of distraction. Humour cannot take away our feelings or the problem however it can help take the intensity out of the situation and helps to calm us. Some people find that it helps them to name their pituitary condition or the cause of their condition, such as Amanda (patient story) has done. For example, naming the tumour Tom and making jokes about how Tom is going to be evicted from your head. Younger people might even like to make a silly/funny picture about what their condition looks like, for example giving it funny types of body parts like 5 legs.

Relaxation: There are many different forms of relaxation such a meditation; however the easiest to learn is deep breathing. This is breathing from the bottom of your lungs. To check if you are doing this. Place one hand on your chest and the other hand on your stomach. Your hand on your stomach should be moving more than the hand on your chest. Also slowing down your breathing, so you breathe in to the count of three seconds and breathe out to the count of three seconds. This has the effect of shutting down the stress systems in your body.

The take away message is that your feelings to receiving a diagnosis of a rare condition will be unique. You are likely to fluctuate between different emotions. There is no right or wrong way to feel. What is important is that you manage your emotions in helpful ways and there are people to help you if you need it.

Disclaimer:   The information in this article, whether provided by WAPO, Ms Lynn Gibbs, APF or any other party, is not intended to be used as a substitute for professional health or other advice. This material may not be reproduced in any form without the permission of Australian Pituitary Foundation.


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