Keep lines of communication open
Remember that a diagnosis of amyloidosis like any serious illness will change the life of not only the patient and the carer but all the family members in different ways.
- Whatever is happening in your life try to maintain open communication with your loved ones.
- Talk honestly and openly where possible about your feelings.
- Be honest about your diagnosis.
- If you are a partner or a close family member it is better to say something than nothing at all.
- Be honest. If you don’t know what to say then say so.
View how patients and carers with ATTRwt and ATTRv reacted to their diagnosis.
(scroll down page to ‘PATIENT & CARER PERSPECTIVES’ section to view videos)
Communicating with your children
Children and teenagers often sense something is wrong. Adults can underestimate how well they can deal with gentle truth. Teenagers report that they often learn about their parent’s medical problems by overhearing phone conversations.
- Be honest about what is happening in language the young can understand.
- Listen to their questions and if you feel you cannot answer them ask someone else to do so. Perhaps a health professional.
- Younger children may start to blame themselves for their parent’s illness and feel very shut out and sad if no one explains in simple language what is happening. This may result in behaviour problems.
- Seek advice from your GP or your treatment team if you are concerned about your children.
- Try to maintain as normal household routine as possible.
Suggested reading. (Exchange the word amyloidosis for cancer).Talking to Kids About Cancer
Intimacy is integral to the quality of our lives. Intimacy involves feelings of liking or loving one or more people and may lead to physical intimacy.
Sexual relationships involve a complicated mixture of emotions, feelings and practical considerations which will be affected by biological, psychological and social changes.
A diagnosis of any type of amyloidosis will have an effect on the patient’s and partner’s sexuality. During the shock of the diagnosis, sexual relationships are usually the last thing on any one’s mind. However research in cancer care shows that sexuality is a key concern for many patients and their partners as they learn to live with the consequences of their disease.
In all types of amyloidosis organ and tissue damage and treatments side effects can impact on the patients physical wellbeing and therefore on sexual pleasure. This is particularly so in those with advanced neuropathy affecting feeling and mobility, advanced cardiac involvement and constant problems with diarrhoea and constipation.
Men who develop erectile dysfunction preventing them maintaining an erection, often feel they are letting their partner down. Some say they feel “half the man they once were”. This can lead to anger and depression.
Many couples negotiate through these times successfully but some couples will stop having any type of physical relationship because they are concerned this might make things worse. Without discussion this can lead to misunderstandings and added stress.
Although sex is often the way of expressing and experiencing intimacy, intimacy can be achieved by being physically and emotionally close without sex.
Your GP or treatment team are there to listen and will refer you to the correct health professionals. However it is often up to the patient to raise these issues as the subject of sexual intimacy may not be raised routinely.
Suggested reading: (replacing the word cancer with amyloidosis)
Accept Role Changes And Ask For Help
This may only be for a while however while role reversal is often necessary it often comes with emotional stress.
Open communication is important as is asking for help, as these changes will affect the lives of all those involved.
Learn About Your Disease
If you want to be involved in making informed decisions about your treatment you need to be able to ask your doctors questions. To be able to do this some knowledge of your type of amyloidosis and why it is affecting you the way it is affecting you, is vital.
Remember that no two patient’s disease is exactly alike even though the amyloidosis type may be the same.
Communicating With Your Doctors and Asking Questions
Asking questions is an important part of learning about your own type of amyloidosis, however:
- Doctors are busy people. Some are excellent communicators while others are not.
- Your doctors and the treatment team are there to help you understand what is happening with their disease and treatment at any one time.
- Doctors vary in the way they deliver information.
- Much of it will be verbally but some will also give handouts or suggest web sites.
- You can ask your doctor‘s advice on where to find the best information.
- Patients being treated for AL amyloidosis are usually given in depth information about chemotherapy and other treatment drugs by a specialist nurse.
- Over the last 20 years specific amyloidosis support has expanded across Australia.
- Support services offer practical and psychosocial help.
- The way patients and families use support services is a very individual decision and will vary as needs change throughout their illness.
Useful web sites.