Post Edited By Moderator (Admin) : 4/12/2005 1:19:59 PM (GMT-6)
The psychosocial issues related to living with a chronic illness affect both the people who actually have the illness and those who love them. I think that it is very important that coping skills be taught early to kids with CF, especially now that they are living longer lives and having to cope with adult issues on top of dealing with a life shortening illness.
Here is a list of copying skills that I wish my boyfriend had been taught early, instead of trying to learn now.
1) Positive self talk (I.E.: I am a bright and wonderful person, I bring good things to this world and good things come my way)
2) Relaxation techniques (deep breathing exercises, use of imagery and meditative/prayer activities)
3) Knowledge that asking for help is okay, seeking information from others is okay, and being proactive in health management is empowering.
4) Living a full and rich life is a right of all people including those with chronic disease. It is not cruel to let people love you just because you don't want them to have to 'watch you suffer and die'. Individuals will make their own choices about what they can/can't handle and adult relationships may cause heartbreak, but that is part of living a quality life no matter who you are.
5) More detailed information regarding reproduction, genetic counseling, communication skills, and knowledge about the grief process and ways to navigate it.
I hope that this information is helpful to you. There are numerous books and web sites that give more detailed information about some of the skills I mentioned above.
Hi - "Thegirlfriend" i think you had great points - go you! Your boyfriend is a really REALLY lucky guy.
I'm new to the CF thing...I explained my weird situation on another post...the ultimate irony: I start med school, learn about genetic diseases, see odd similarities between myself and the CF cases we learned about, my husband and I get genetic testing in preparation to get pregnant, and I'm told "Oh, you were told you were asthmatic but actually you have two CF mutations..." Let me tell you - that was NOT a sentence I expected to hear, especially as a 25 year old almost doctor! BUT I wanted to reply to this one post as a medical student. In med school we are bombarded with hard sciences which most do fairly well in becasue it is what medical students are used to: black and white answers, and understanding that comes from sheer memorization. The classes that give people the hardest time are not the biochem or the pathology, but the behavioral science ones...where med students have to interact and understand their patients. I have never had this problem (biochem was quite a battle for me but i aced my social psych classes!!) and find it amusing how my scarilly smart friends who can practically recite the entire pharmacology text freak out when they have to bond with a patient. After seeing patients, the most typical thing most med students (and even our physician mentors) say is that we are not mind readers, and wish the patients would just tell us what they feel/need. So my point is this: doctors don't have all the answers by FAR. Docs are people too and we really dont get much training in bedside manner or what patients need psychosocially. Most docs have had their noses stuck in hard science books for so long that psychosocial issues don't even occur to them. Not that there are not good, caring physicians out there - there are (and I hope to be one!!) but a lot of docs really don't know what people need emotionally. SO if you have an idea, you really should not hesitate to suggest it to your doctor. Most docs are open to patients' thoughts and will welcome your imput. Most likely you will reap a benefit and so will others becasue your doctor may be able to help someone else through your idea. I'm not sure if this perspective will help anyone...I really see doctors differently now that I'm in medical school myself.
All the best to you all! - Anna