I AM ME: A SUGGESTED RX FOR LIVING ABOVE AND BEYOND THE REALITY OF CHRONIC DISEASE
• No matter how bad your symptoms are, you are the text of your own life, not a footnote attached to a list of symptoms.
• Friends are an important source of comfort and support but remember you do not have to disclose all your health information to everyone you know. You are not applying for a bank loan -- full disclosure is not mandatory in every relationship!
• Your medicine chest is like your diary. If you want to open it, fine. If not, the revelation of the contents of your medicine chest can remain locked except to your medical care providers.
• Not every single person you know really wants to hear all of the details of your last hospitalization. Both the telling and the hearing of your personal war-stories can grow tedious and tiresome.
• If you feel trapped inside your body and/or your disease take yourself on a fantastic imaginary trip. An elaborate “mental departure” can do wonders for your spirit. Travel widely and adventurously in your mind. Even if you can't travel in real time, do what you need to take yourself out of yourself -- movies, travelogues, travel books and magazines. Force yourself to recall, even write down, the details of a trip you took in the past that brought happiness or relief from sadness.
• Always be patient with yourself and compassionate towards yourself. Chronic illness is a day to day challenge, a life's journey. It is not, however, a test. You are not going to receive a pass or fail grade. We do the best we can whenever we can.
• Find something to do! Any and all work is meaningful—whether it is paid or not.
• Forgive yourself for not always getting it "right" with other people, and forgive them if they let you down in a crisis. Forgiveness is healing .
• Be brave enough to limit contact with people who make you feel diminished. Know when a friendship or a relationship has hit the toxic overload limit and then leave it -- don't complain and don't explain, just leave it.
• However broken your body or serious your condition, you are still a whole human being and deserve to be respected and treated as such.
• Do accept the kindness of others. But refuse anyone's pity. We are not victims. We are people living our lives each day despite
• Unless it is your doctor, you are not required to describe how much pain you feel or how you feel about being unwell.
• Never use your disease or condition as a weapon or a manipulation to get what you want or to excuse yourself for very rude behavior.
• Having chronic disease does not define our entire being. It is a piece or many pieces in the puzzle that makes up our lives. But we have many other pieces that are not about symptoms, disease, doctors, and treatments.
• When you are unable to participate in something because you have chronic disease, you are entitled to say: “ I am at this moment unable to join you. I wish it were otherwise, but I know what I can manage and what I can't.”
• Take the initiative and suggest things that you can participate in to your family and friends. Think about what you can do and not the things that you wish you could do.
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