My wife Elizabeth and I have been living with TMJ Disorders for the last 28 years. Yes, I say both of us have been living with it, because although she is the one with constant pain, who has endured multiple surgeries, and tried countless treatment programs – it affects both of us. In fact, TMJ Disorders impacts not just the patient but everyone around them.

So I would like to start a dialogue geared toward how we, as the support group for people with TMJ Disorders, can help them cope with the disorder. I am going to start with one of my favorite topics, and that is the importance of being an advocate when dealing with the healthcare industry. We all have, I am sure plenty of horror stories in dealing with doctors, nurses, dentists, physical therapists, insurance companies and everyone else involved in providing medical care for the TMJ patient. My personal opinion is that one of the most important things you can do for someone with TMJ Disorders is to get involved in their medical care. Here are a few things I think we can do to help improve the quality of care the TMJ patient receives:

1.) Try to periodically accompany them to office visits with their various healthcare providers. I believe it sends the message that we are serious dealing with the disorder. Also I can be more assertive in getting clear answers.

2.) Help prepare for the office visit – determine what needs to be communicated to the doctor, and organize the information that will be shared with the doctor. Discuss how to approach a topic. It is an unfortunate fact that our healthcare providers control the care we receive, making sure we communicate what we need while keeping them on our side is key, and this requires being prepared in advance.

3.) Make sure the doctor is “getting” what is being communicated. My experience is that doctors don’t always hear what they are being told, and sometimes aren’t really listening. I have a loud voice, and on occasion I have talked over the doctor to get him to listen.

4.) If I attend a doctor’s visit with Elizabeth, I make a point of doing two things. I take notes; it really helps later when we are discussing what was said during the visit. Also it allows the Elizabeth to focus on the doctor, not writing notes and I’m prepared with questions. I think doctors are more attentive to the patient when they know someone is really taking an interest in what is being discussed.

In summary, share the goal of ensuring the best possible healthcare – better care will improve both your lives. So what do you think? I am interested in your ideas on how to be a healthcare advocate.

Don Birk