Coping with ourselves is not as easy as it seems, even for those who have no physical malady. A diagnosis of a life-long disease condition can be devastating, it really puts the pressure on our ability to deal with it. Most of this dealing is done psychologically, after we have adapted to the physical problems.Not unlike a death of a family member or friend, the news of a major life-changing disease or disability puts us through the same sequence of events. Disbelief, denial, grief, anger, withdrawal, and finally acceptance. Acceptance must come if we are to cope, but acceptance also brings a thousand question ...why me, why now, why not someone else, and "I've always been a good person". There are certain places and people to avoid at this time, those who would give you the answers to those questions.
We must never give up hope for some kind of cure or a coping miracle...after all, looking forward toward our future with intelligence is what makes us human, and that is why so many of us pay attention to announcements of instant cures, items with magical properties, mantras, diets, mega-vitamins with secret formulas. My attitude is this: "if it sounds too good to be true, it probably is". Save your money, because after your wallet is empty, and the hopes you had of a cure are dashed, you will once again be dealing with acceptance, but this time all your savings are gone, bringing that extra shame that comes with being 'had'.
Newsgroups/usenets have a thousand places to post your questions, and most are not moderated. All of them are peppered with miracle cures and self-righteous blame. One such post I remember on the arthritis newsgroup ...something like "It's stupid to put money into aids research, after all these people did it to themselves" and "They should let all the gays die and give all the aids research money to arthritis research" ..another .."It's a judgment from God, that is why you have (fill in your own disease)". Needless to say I don't hang out there, I don't even bother posting announcements of my help sites there. It is difficult enough to cope without being blamed, or without being given false hopes. These lifelong conditions just 'are'. As a moderator of my own boards, now and in the past, I've never tollerated spam, insults or self-righteousness on any of my boards.
There are no direct answers to coping. The best anyone can do is to start by finding the correct information needed to give understanding to life. With understanding of our own condition comes the feeling of some control, which in turn gives way to 'self-efficacy', (the belief in oneself, if you think you can accomplish something, you probably will.)
Let's face it, once you get home you have to live with it. This is where coping comes into its own. Who you hang with, friends, family, home nurses, neighbors, your church elders, and the internet will become your life support system. You must get on with life, and being open to talking, sharing, and accepting different views of how to cope will give you more options in how to proceed with your own life.
