By Dr Sue Jackson
Peter’s story is, sadly, not uncommon. While there are lots of examples of good monitoring and healthcare provision, there are also lots like this one, where things go wrong.
I’m all for patients having access to their test results, but if the patient isn’t told about the limits of the tests that are being used to monitor their condition, then that sets both parties up for potential problems later on. Part of the problem with diagnosis is that symptom clusters overlap, and so it can be very hard to determine exactly what it is that’s causing the feelings the patient is experiencing. I do think, though, that it’s particularly difficult for pituitary patients. The endocrine system is particularly complicated, and getting a good working knowledge of your condition can be very difficult. How are patients supposed to know what tests are needed and how to interpret those results? Lots of patients with chronic conditions find that they have to become expert in their levels of knowledge, but not all healthcare professionals acknowledge their expertise, while some others just assume an appropriate level of knowledge in their patients which is fine if they’re right, but if they’re not, it leads to problems.
I don’t think that some healthcare professionals understand how having a pituitary condition affects a person’s relationship with their body, and what that means for them. To be told you have a brain tumor has to be one of the most shocking things that can happen to someone. Radiotherapy is a particularly difficult treatment to undergo, and the long-term effects, as Peter says, are profound not just in terms of physical functioning, but also in terms of psychosocial functioning, too. Many of the patients with whom I work often confess that they don’t trust their body any more. It has let them down badly and they’re not sure what it’s going to do next. They live in quite an anxious state which affects everything that they do. They can never relax and trust that everything will be OK.
Every day in many ways, your body will give you information about what’s going on with it. In the context of a fearful and untrusting relationship with your body, how do you know how to interpret that information? Remember, post-treatment, pituitary patients are living with a changed body. Hormone replacement therapy may be effective, but equally it may not be, or it may require some finessing. It can be very difficult for patients to know what symptoms to report to their GP/specialist. As Peter says, it’s not just about one domain of life, it affects everything, but a lot of healthcare is focused on purely physical functioning, and patients can feel discouraged or prevented from talking about their other signs and symptoms that something is wrong.
I think it’s particularly difficult for men. When psychologists design questionnaires (aka psychometric tests), we often look at how the different genders respond to the questionnaire. It’s very hard to get men to take part in such research, but when we do, we often find that their scores are often very different to those of the women who take part.
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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