When you are first diagnosed with a condition that affects your brain, you may go through a period of shock and surprise. At the same time, there might be a part of you that has suspected a problem with your brain health for some time. One of the first things you may ask yourself is who should know about your diagnosis and how can you tell them.
Reasons to Tell Family About Your Brain Disease
It is very important to involve loved ones as you learn about your diagnosis and treatment options. Some people are very private by nature and would prefer that their diagnosis not be widely known. That is normal and natural. Others have no problem telling loved ones, friends and associates what they are going through.
However, there is a very good reason to share your situation with at least one trusted friend or family member: You will sometimes need someone to come with you to medical appointments. There will be occasions when you need a responsible driver, and it is also helpful to have someone else listen and take notes on such things as managing your medications, scheduling and any changes in diet or exercise. Taking a tape recorder with you can also help you remember all the details of what the doctor or nurse said.
Eventually you will have to have a conversation with more members of your family about your diagnosis. Though some brain diseases, such as strokes and noncancerous brain tumors, can be treated, others can be terminal or have longer-lasting effects on your memory, abstract thought and ability to get around and care for yourself. Even mild cognitive impairment can make it hard for people to make good decisions about their medical treatment. You will need help.
Here are some of the topics you will want to discuss with your family:
Start by explaining your diagnosis and what it means. Acknowledge that your loved ones might have been worried about you based on events or symptoms that have already happened. If you can, tell them what to expect as you go through treatment or as your disease progresses.
You do not have to do this by yourself. You can ask a doctor, nurse or social worker to help you or you can use pamphlets and materials available from local clinics or associations. If English is not the primary language for some of your loved ones, you might be able to order information in their language to help them understand.