Chronic Disease                                                                              Nancy Burkhart, EdD In most cases, being told of a chronic disease is very unexpected and frightening for a patient.  Although many questions may arise instantly, most patients want to know the cause of the disorder and what they can do to fully recover. Initially when a patient is told that they have a chronic disease, it is difficult to comprehend all the information that is being given at the time of diagnosis - whether it is given verbally or through written information. Often, many patients return home and cannot remember precisely what they were told or begin to construct questions that they wished they had asked while at the office or hospital. In any form of communication, we retain only a small portion of what we initially hear and when the emotional factor of being diagnosed with an illness is present, this retention is diminished even more. It is important to follow a few guidelines that can enhance your ability to receive the proper educational materials and to promote the communication that is necessary to obtain good healthcare for your disease. TIPS: COMMUNICATION ABOUT ORAL LICHEN PLANUS Ask what is presently known about the disorder. You would want to know the type of lichen planus that has been diagnosed, and exactly which locations are currently involved. Ask about any "trigger" mechanisms that may make the conditions worse, and what current treatment options are available to you.   If you have been newly diagnosed, you may have follow up questions that you wished you had asked. We are here to help you with general questions, but calling the office where the diagnosis occurred, and where your particular case is known, may be the best option. Also, ask if your healthcare providers have e-mail. Most people do use email and because of the hectic schedules during the office hours, this form of communication can be great in answering questions that do not need detailed information. This is an excellent way to be reassured as questions and concerns surface. Additionally, it does serve to reduce stress levels for patients - this is especially important with lichen planus.   Keep a journal and record any changes that occur. Try to note any "trigger mechanisms" that seem relevant and tend to make your condition worse.   Write down any observations or any questions that occur between visits. Be sure to bring the list with you to the appointment and go through each finding.   Ask how often you will be evaluated and will this be a visual exam with recorded findings and will photographs (digital or slides) be used to compare your current status with past visits?   Make sure that you let your healthcare providers know exactly what medications you are taking and any changes that occur between each visit.   Research data and articles are available through our support group and also in various locations on the World-Wide Web. Researching your own disease can be helpful, and allows you to share with others in the support group. Also, be sure to share any findings with your healthcare providers. Do make a copy for them and ask them to share any new information that they discover with you.   Contact your healthcare provider if you think that a change has occurred in the tissue or if you notice a difference in any sensations such as burning or pain.