Communicating a chronic disease is a terribly difficult task. There are a few advices I can give you, but in general it depends upon the person you are speaking with. Those who pretend to know more about my health condition than myself, for example, are extremely annoying.
It’s always the same: They have read this article. They know now. I am not dealing with my disease the way I should. The article will change my life.
And then there is “this person they know”. This person has the same disease as I do, of course and does not suffer at all. He or she leads a completely normal life – so why don’t I as well? Alternatively, “this person they know” could also be doing things like taking a bath in lemon soda each day or eating butterflies for breakfast. And I should do the same.
Even more frightening is the “doctor or non-medical practitioner they happen to know”. This individual seems to be the only person in the whole world who can cure me. I must go there, tomorrow. And forget about all the crap my specialists have told me so far.
Actually, those who pretend to know more about my disease than I do, are pitying me a little bit for being so uninformed. If they were in my position, they would be cured by now, that’s for certain. I must be known as the most incompetent spoonie far and wide.
On a regular day I might meet someone first who scolds me for trusting general practitioners and who won’t let me go without promising to immediately get an appointment with his or her naturopath. Later on, I might talk to another person who is horrified by the thought of my consulting someone who works outside of a regular hospital. This person will quickly refer me to a specialist he happens to know. The only specialist who can help me by the way.
Neither my personal experience nor the information I have gathered will convince the people who pretend to know more about my disease than I do. The best way to deal with them is to write down the phone number they are so anxious to give me and to change the subject as quickly as possible. I know they only want to help…. but did I ask for help?