Health is a very private matter. Health information is handled differently by everyone, especially a new diagnosis. Some people tell everyone while others may keep to themselves or only tell their immediate family. There is no standard for how to respond. It is personal.
The internet offers loads of websites with personal descriptions, experiences and feelings of diagnosis, disease processes and treatments. It may be easy to read but can be hard to live and discuss with others. I understand both sides of this coin.
There are many reasons to keep new health information private. The most basic reason is not to deal with peoples reactions. If a disease process has been stigmatized, like HIV/AIDS or mental health issues, people often have misinformation and the reactions will reflect that. I had a relative who contracted Hepatitis B before the immunization was available from unsterilized dental instruments in India. The medical profession at first glance, insisted it was from IV drug use or unprotected sex. This was not the case and to this day the first question from a new doctor or NP is “were you an ex IVDU?”
There is often need for a person to filter the impact of a new diagnosis in order to deal emotionally with the possible treatments and life changes. It is not easy to explain to others a personal process. I belief people reach out when the time is right. That time may be immediately or months later.
In my job as an advocate, I let people tell me what is important. I understand the need to maintain control of this information. I request the information, I need to get the job done. If I need more information, I ask the client. I respect the clients right to privacy. I think it is a matter of building trust about how I will use the information. I am a firm believer in the HIPAA laws and always tell my clients give me what we need to get the job done. I follow this concept because so much of our lives are public. At a persons most fragile time, it is important to offer control of information and support.
