A reader of an old internet mail list called The IBDList wrote:
So much about having these illnesses cannot be communicated to your own physician in a 15 minute or even a 2 hour appointment. I have an excellent gastroenterologist, but he is extrememly busy and, unless I am in extreme distress at the time, I always hesitate to take up his time. And, of course, some of it just isn’t discussed because it is part of the illness. How do you convey pain? Or extreme embarrassment?
That’s why the list is so important. Sometimes, you just feel likethere is no one to tell or understand. Family members and friends can try to understand (or not), but this goes on so long and is so personal thatyou begin to feel that you are just making people feel worse, so you stoptelling anyone.
When I see comments such as this I have mixed feelings. I want patients to be able to express themselves and talk about their problems. However,I understand that as much as one may try to understand a patients condition,there is a world of difference in understanding the condition and actuallyhave suffered the illness. The physicians role is to understand the patient,the disease, and the treatments well enough to give good advice. Thus,the patient may give enough information to allow the physician to givegood advice, but that may well not be enough for the patient in terms ofemotional support.
Since physicians are limited to understanding the disease through theirpatients, I think it is important for patients with chronic diseases toseek out support groups. Sharing one’s problems with someone who has beenthere is important. Unless your doc has IBD, you probably cannot get thatlevel of understanding. Perhaps, even if you have a doc who has IBD, itis still not the same, for docs know the disease well enough that thereis perhaps less fear of the unknown, even if it is a happy little delusion.
That said, lets use some common sense as well. If you ahve a doc whonever has the time, it may be time to help that physician by decreasingtheir workload. Another doc who has the time may be what you need. Oneof the marvelous things about medicine is the variety of people you meet- both physicians and patients. The variety of needs that patients haveusually can be met by some physician out there. Another use of supportgroups, getting insight on what each doc in the community is like.
So, if you feel you are a burdeon to your doc, it may be that you need a new doc. But if it is a matter of not being able to really communicate your burdeons, a support group might be very important for you to join.
An online forum of support that I recommend is the IBDList. [The IBDList was a mail-list that was discontinued years ago. The reader is encouraged to browse the internet for one of the many resources now available, and especially to look the the CCFA for local support groups – Ed.]
Stephen Holland, M.D.
Section of Clinical Pharmacology
University of Illinois College of Medicine at Peoria