Having a rare, chronic illness can be distressing at times. People often feel frightened and alone. At first, after diagnosis, the doctor you trust most often can't help you or explain what is going on very well... partially because they don't necessarily understand it all that well. As patients, this is a difficult thing to face, especially when Google is one of the most misleading ways to find information if you don't exactly know what you're looking for.
This is where illness friends come in. I look at the illness communities on Facebook and just think about all the questions people ask. Questions of why or how. Questions of who or when. Questions of what. Distressing symptoms are altogether too common when you have an immune deficiency, so you feel a little silly running to your doctor with them all the time...
That begs the question, then, of who you CAN turn to... Your sick friends. Inevitably, someone somewhere has had or heard of what you have. It is group think at its best. "Hey, sick people. I have a problem. Anyone have any ideas? What should I ask my doctor?" Some people even think they are asking silly or stupid questions, but I've learned that none of the information gained can be taken for granted. I don't know how many times I've explained infusion reactions to doctors... information I learned through trial and error and the experience of others. It would be difficult to properly explain what it means to actually understand what is going on better than the medical professional who is supposed to be helping you. It's a weird world, living on the medical margins. Your best bet is really to be plugged in to a community to help you.
I definitely still need my doctors and nurses, but my sick friends make appointments so much easier and have really improved my quality of life through their generosity of spirit and their generosity of knowledge. Thank goodness for them.
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