My son has had a digestive disease for the past six years. During those years we have had some excellent medical help and some that was questionable at best. That is understandable-quality varies in all professions. But what is hard to come to terms with, is that every so often, it feels like even the good doctors just don't get it.
I think this plays out because we (patients and doctors) each live in different worlds. Although we both share the same goal-improved health-we have different perspectives, and disease can impact each of us in different ways.
Living with a disease or a family member with a disease 24 hours a day, means going through the ebbs and flows of the emotional and physical effects of the disease, and the great potential for exhaustion. This is quite a bit different than having the goal of improved patient health as a part of one's work.
Elizabeth wrote in her last SharePost, "Unless you are actually the one living with a chronic illness like IBD, I don't think you can really understand just how exhausting and overwhelming it can become." I agree that IBD may rank up there as one of the top conditions not easily understood by those who don't live with it, day in and day out.
If I can offer any consolation about the potential for an improved understanding on the part of the healthcare provider, here is what I have learned over the past several years as a parent, patient and family advocate:
Sometimes it just takes time to build a relationship, even with a good doctor.
It's not just about the passing of time, for time's sake, but it is about what happens over time in the relationship with your doctor. If enough time passes, he or she will get to see you and your family at their best, and at their worst. Your doctor will see not only how his hard work can pay off when the illness is at its worst, but he or she will also see that when you are not under the duress of your (or your family member's) disease, you are a pretty successful human being - maybe even a better business person, or parent, than he or she is.
As time passes in your relationship, one of your doctor's own family members may be diagnosed with a chronic disease, and then your doctor may have to figure out how to get to work without much sleep, or maybe he or she won't even be able to get to work because of how a family member feels, or because your doctor has his own medical appointments to attend to.
Trying to communicate the personal impact of a chronic illness like IBD to a healthcare provider reminds me of the quote by Winston Churchill: "Democracy is the worst form of government except all those other forms that have been tried from time to time."
As potentially hard and frustrating as it can be to communicate to your doctor what you are experiencing as a result of your disease, you can't stop trying. It's still the best you can do.
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Published On: September 03, 2008