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3. Being the Boss of Your CF Treatment
Learn as much as you can about CF - get all the facts!
If you know about CF yourself, you will feel more in control. Organisations such as
CFWA are available to assist with up- to -date resources and information about CF
if needed. Talking to someone who is knowledgeable about CF can also be helpful
to get a different perspective. It is good if you find someone who is approachable,
can speak openly about the different aspects of CF and is also up- to- date with
their information.
Due to cross- infection, CF can be a very isolating illness, however, the value of
speaking to someone who knows exactly where you are coming from can reduce
this feeling of isolation. If you follow the cross- infection rules of one metre
distance, or use other forms of contact such as Face Book, e-mail or Skype, you can
still interact with other people who have CF. CFWA can also put you in touch with
other people who have CF who may be close to your own age and have similar
interests.
Talking to doctors and other health professionals
You are probably quite used to interacting with a variety of medical practitioners
and specialists. However, when it comes time to visit doctors on your own or
to discuss issues you don’t want your parents to know about e.g. sex, drugs or
depression, anxiety or incontinence it can be embarrassing and nerve- wracking.
Not only do you have to consult with your CF medical team at SCGH, you also
may need to discuss other health or emotional issues with your local GP. Being
examined and questioned about your body can also be intimidating, especially
when the doctor needs to examine you in places you have always considered
private, such as your genitals or breasts.
To make things easier consider the following things about the
doctors and medical professionals you will interact with as an
adult
• Your doctor’s seen it before. Most experienced doctors have cared for hundreds
or even thousands of patients, so chances are they’ve heard, seen, and even
smelled just about everything before. No matter how troubling something
might be to you, it probably won’t surprise your doctor.
• Your doctor is there to help, not judge or punish. Your doctor is interested in
keeping you healthy, not judging you for something you have or haven’t done.
For this reason, a person who is concerned about a sensitive topic, such as