How to Explain Your Rare Disease to a New Doctor

Doctors are trained to look for horses instead of zebras. You may have to inform them that zebras do indeed exist.

Sometimes it seems like you are explaining yourself and Behcet’s syndrome all the time. Perhaps to explain to a friend why you “look tired”, or to a family member who is worried about you. Perhaps it is just to a stranger who was kind enough to chat, but the last person most people would expect to have to explain their illness to would be a doctor. Until you get that rare disease, you think that doctors know a lot more than they do. The fact is that they are trained to look for horses instead of zebras, and every now and then you have to explain to them that zebras do indeed exist.

You've never heard of Behcet's disease? Well join the club, most of my doctors haven't either.:
Sourced via Pinterest User @Shannon P Thanks!

So how do you go about explaining your diagnoses to a qualified medical professional who assumes they know more than you, without ostracizing them? Since each doctor is different there is not one answer on how to handle it, however here are a few tips for making it simpler.

3 Tips for Explaining Your Rare Disease to a Doctor Who Has Not Heard of It

  1. Let a new physician know up front about your diagnoses from another doctor. If and when they reveal that your condition is one they have never treated or heard of, then don’t be judgmental. Let them know about movements to increase awareness.
  2. Come prepared with links to websites, journal articles, and legitimate sources that explain your condition. A good doctor will want to fill these gaps in his education, and will be willing to do a bit of research. If your doctor does not seem interested in learning more about your legitimate, but rare condition it may be time to find a better one.
  3. Let them know the symptoms of your illness that concern you the most. Even if they are not familiar with your illness yet, they can at least help alleviate some of your symptoms and address issues that are pressing while they do the background work.

Us Vs. Them… If your doctor is not cooperative in your healing, take the time to find a better one.

Many people with chronic conditions develop an “us vs. them” mentality when it comes to health care professionals. It is no wonder why, because it can feel like too much time is spent in waiting rooms, with hope for relief and then the doctor does not have the answers or the relief that was so desperately needed and looked forward to. It is important to see your healthcare as a team effort with your physician. If your doctor is not cooperative in your healing, take the time to find a better one. Remember that there are two sides to treating your chronic condition as shown by this letter by a physician (Dr. Rob) who treats patients with chronic pain.

You may get tired of answering the question “What is Behcet’s?”

Rheumatologist
Kudos to LA Times on Pinterest for this sweet and incredibly accurate meme we think! @PatientWorthy something memorable your rheumatologist has said to you.

Be prepared to visit several doctors, and to have a new GP reply: “Behcet’s? I am not familiar because it is rare – who else have you seen?” The GP may need to collaborate with experts in the field or even recommend you to another specialist. If they are trying for you, you are one step closer to a good prognosis.

Just remember, the more people who know about it, the more awareness that may lead to research and a cure. So keep on explaining it to people who want to know, so this rare disease can get the research it needs for a cure.


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