From Intimidation to Participation

1. Visit your doctor! Your physician can't help you if you don't let them know how you are doing! Make your appointments. Be respectful of your doctors schedule limitations and patient if they are running late. Don't cancel at the last minute!

2. Be a partner in your medical care. Nationally prominent patient advocate, Dr. Bernie Siegal, wants his patients to be respants, "responsible participants in their medical care." Take the position that you are building your personal medical care team, which includes both you and your doctors. Explain that you will be an active participant. Then, do it! Build your personal skills. Improve your stress management skills by taking a class at your local college. Practice relaxation on a daily basis.

3. Bring Your Voiding Diary! Your voiding diary is an essential tool during your doctors visits, because it will accurately reveal the status of your bladder at that time. Your memory is NOT as good as written, consistent documentation. Not only will a voiding diary help you and your doctor track whether treatments are working for you, but it may also come in handy if a doctor needs information to justify the use of pain medications in your file.

4. Questions are the key to knowledge. Both you and your physician will have questions during your office visit. Try to be precise when answering your doctor's questions. Bring in a short list of questions (three or less, ideally) that you want answered. If you have a specific concern that is upsetting you... ask! No question is a foolish question if it is bothering you... and don't forget to smile too!

5. Don't expect a definite Yes or No. Although we would all like an easy "yes, I can cure your IC," that is not reality, YET. Expect to work with your doctor over time to slowly, but surely, make positive steps in your treatment and care. Trial and error is the only way that you'll both find those things that work for you.

6. Take a family member or close friend with you, at least on your first visit. This is a source of support for you and, if needed, they can help you present your needs in a clear and concise manner.

7. Try to get your doctor involved in the IC movement. Remember, many doctors received little, if any, education on IC. This may be particularly true for primary care physicians who may still believe that IC is "hysterical" in nature. Explain that IC research is very new. Offer to send transcripts or brochures that will help your doctor create a resource library for his or her patients. If they are not serious about learning about IC, ask for a referral to a urology specialist.

8. Build up your IC Tool Kit. Life with any chronic disease can affect your life in many ways. If you're angry, as many of us are, don't take it out on your family! Find a safe way to vent it and/or to use it to motivate yourself to do something positive! Talk with friends and support group members about how you're feeling. You are a normal human being in an unusual situation. Don't be afraid to consult a therapist for short term assistance. We all have to ask for help and guidance at times.

9. Practice Phone Sense! Before calling your physician, organize your thoughts. What is the problem? When did it begin? Do you have a fever? Take a moment and write down a one-sentence description of your problem, your reason for calling, a symptom list, and no more than three questions that you may have. Call as early in the day as possible and have a pad and pencil handy to write down any instructions.

10. Nurture Office Relationships Many relationships with physicians have gone sour because patients are rude to the staff. Remember, the nursing, reception and billing staff are your doctors eyes and ears. Be kind, respectful and explain what you need. With luck, they'll come to treat you as a friend and, when you call, will make you a priority.