Helping family, friends and others to understand acromegaly

How much information you share with your family or friends depends how ready you are to share information as well as how much they want or are capable of processing at the time.

Some family or friends may want to know everything while others may not. Some may understand that you have a serious, potentially life-long condition even though you look fine and want to be there for you when you need them.

What is important is that you talk with them, find out what they are going though as well so they can be there to support you.

Describing where the pituitary gland is and what it normally does can be an important piece of information that helps your family or friends understand the seriousness of your condition.

Pass on factual information that your healthcare team give to you so your family and friends can learn about the condition with you. Although the pituitary gland is close to the brain it is not part of the brain, so make that clear as it is worrying for anyone to hear the words ‘brain’ and ‘tumour’ in the same sentence. It is also important to make it clear that it is a benign tumour.

Let them know that acromegaly is treatable and the options that you have to consider. Discuss the possible long-term effects that your healthcare team has told you, or take your partner or close friend with you to your appointments to hear information first-hand to put both your minds at ease.

Talk about the consequences of your condition or its treatment. For example, can you still have children? Yes, you can, although this depends on your age and general health status. Although acromegaly can affect fertility, getting pregnant if you are a woman, or making your partner pregnant if you are a man is often still possible before and after treatment. Talk to your doctor if you would like further information about your fertility or becoming pregnant if you have been diagnosed with acromegaly.

Try not to shut people out. It is a natural coping mechanism to only give out the bare minimum of information, but the more you can share, the more you will have people there to support you.

If you have children then you instinct may be to try to protect them and only give them very general information about your health.

How much your children can understand of course depends on their age and also how much you know they can process. That said, do not underestimate how much your children may want to know or how much that they have understood.

Importantly, the thought of a parent being ill can be very traumatic for a young person. Having another adult that knows about your condition, such as a friend or schoolteacher, may be helpful in case you are not available at the time to comfort them.