Chronic care involves more than clinical expertise

Who knows you better than anyone else? Not your parents, your husband, wife, children or best friend; but YOU!

But, their many years love for you becomes immaterial when you’re first diagnosed with lupus or another chronic illness or autoimmune disease. Friends and family likely remember their reaction to your diagnosis and their feelings of powerless to protect you from the ravages of lupus or other autoimmune disease.

On the other hand, your doctor remained quite objective, even aloof, through the maze of tests ?

When you were first diagnosed with lupus or another autoimmune disease, you needed some hand-holding, right? At a bare minimum, you wanted the feeling that your doctor is in this for the long haul; you don’t feel those warm fuzzies, those vibes. You only feel ‘cold pricklies.’Why?

Someone needs to be the objective person in the room; and often your doctor is it. Much to your dismay, it’s not his ‘job’ to make you feel ‘good’ about having a chronic illness. His job is to guide you and your family through the maze of tests and explain why, for example, the lab needs 10 tubes of blood for one test! Or, why they need to do a test  that was done just did last month!

You doctor can be the incredibly excellent teacher, he and his team clinically astute, but he doesn’t work alone. He can’t. Instead he relies on your accurate reporting of your symptoms.

He needs more than a statement, “I didn’t get much sleep last weekend.”  He needs a partner, he needs a patient who will give him information like, ” I’ve not slept much more than 4 hours every night for the past 2 weeks and my boss has been on ‘my tail.’ Could that explain my flare?

Unless the doctor knows those little details (which may seem unimportant to you)-how you slept, that you didn’t sleep much, that you were in an unpleasant relationship which didn’t end well, he/she can’t put facts together and create a clinical picture.

A picture like, “Well, sleep causes an inflammatory response in the cardiovascular system. Could that explain the rise in her blood pressure? It also decreases the body’s immune response. Could this explain the frequent colds and flu that I’ve noticed?”

If you don’t let your doctor know things, even things that you don’t think are important, you’re doing yourself a disservice. Keep a journal of the time you rise, the foods you eat and the symptoms you experience and let your physician know more than you think he needs to know. He/she has a way of listening to your story and still getting the facts that he needs to know.

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