TMJ Friends

You have gone from the stigma of “always being sick” to the stage of being “chronic” by Mr. Websters definition it means: “constantly vexing, weakening, or troubling, frequent recurrence, being such by habit and not likely to change.”

In this age of political correctness there must be a term that better describes what it means to be a “chronically ill” patient. On this vast highway of information, we come across many back roads that deal with the chronically ill patient, written by both professionals and patients themselves who deal with this issue on a daily basis. There are a million and one theories (some tried and proven) on how to treat the emotional aspects of this enigmatic condition. Since it is so varying in type and embodies so many disorders and diseases, the approach must be tailored to the individual.

To generically call all patients with recurring illness of long duration as “chronically ill,” is like throwing everything but the kitchen sink into the pot and calling it Stew.

Some people with a chronic illness function well on a daily basis, while others are totally disabled. However, one area that every person with a chronic illness CAN identify with, is the emotional rollercoaster surrounding diagnosis, treatment, acceptance, and incorporating their illness into their life.

There is a myriad of emotions that are natural after the diagnosis of a chronic illness. Anger, denial, hopelessness, fear, guilt, confusion, grief and avoidance just to name a few. All are normal, and not everyone experiences all of them. They don’t necessarily come in a specific order, and may re-occur at any time.

• Anger - Why Me?
  Your anger often leaves you with a sense of shame for becoming a person that you don’t recognize anymore. Unexpressed anger is not healthy, and this is a good time to seek support and advice. Perhaps a therapist or a support group who understands and will offer the tools to help you redirect that anger in a positive direction would be beneficial. Admit your feelings and share them with family and friends. You may not be able to avoid getting angry, but you sure can learn how to respond to it in such a way that it doesn’t consume you.
• Guilt - I am neglecting friends and family. I am too needy. Did I do something to cause this?
  Learn how to be humble and ask for help, because people love helping. It is also important that you teach people how to help. Not all your friends and family can be there for you in the way that you may think you need. Remember that some friends may not be able to give you the emotional support you want, and they may not feel comfortable with your illness… but they also may have other things you need, such as the ability to make you laugh. Keep and nurture them.
  Understand that you really have no control over an illness; don’t let it prevent you from getting the help you need because you feel as though you don’t deserve it.
• Confusion - What is this that I have? What is this doctor saying to me?
  The big picture of things becomes overwhelming, so instead look at the small snapshots. Study, research, and learn as much as you can so you are able to actively participate in your healthcare. Drive your own bus, and it will give you sense of empowerment.
• Grief - For the loss of the life that you once knew.
  Dwelling on how life was in the past results in a feeling of hopelessness. Small things can take on new meaning…. a hot bath, the start of a new season of Project Runway, a short walk, a hug from your child. Future plans mean what you are doing today, not next week, but the next hour! If you compare yourself to the person you were once, you will never measure up. Set new goals and standards and recognize your limitations. Make a list of what you like about yourself and be good to yourself in thoughts and deeds.
• Hopelessness - It will never get better, I will just give up.
  At some point you make a conscious or unconscious decision to either control your illness or to let it control you. It may seem that all you do in your life is overcome one obstacle after another, but once you learn that these obstacles ARE your life, you can learn ways to live with them.
• Denial - the refusal to accept the illness.
  In some cases this is not a bad thing. After diagnosis, it gives you the chance to pull yourself together, and gather the strength to face the future head on. Denial may also cause you to keep shopping for a doctor who will tell you what you want to hear or you may even search for that elusive “quick fix.” It is important to accept that your illness is a long term part of your life. This begins with learning how to integrate your illness and its limitations into your life. It is a long process that begins with short term solutions, that must constantly change to help you adapt to your current state.
• Steps backward
  It’s okay if you take steps back in order to go forward. Sometimes you have to step back and re-evauluate the situation, and change your life accordingly. It does not mean you have failed.

A friend once said to me “while I will never be thankful that I got this disease, I will always be grateful for what I have learned from it.” I truly believe that, and I hope one day you will, too.

Surrounded - Photo originally uploaded by Harry_S

At the time of diagnosis, often times a patient becomes very emotional, or very detached (of course there are degrees in between). Many people tend to take their diagnosis at face value, and place their treatment in the hands of a doctor. They are often too emotional to take charge.

The detached will start forming a game plan. They research, ask questions, and become an active participant in their treatment. They also tend to unconsciously put emotions on the back burner. They are so incredibly busy “staging the battle” that the thought of dealing with emotions doesn’t even cross their mind.

As part of “staging the battle”, many patients also rally the troops. Patients find themselves surrounded with family and friends. All of them relaying stories about their great aunt, Uncle Joe, and their cousin’s boyfriend who went through the same thing and were just fine. Sometimes, the opposite is true, and people will shy away because they do not know what to say or how to act. This is a very precarious time, because the way you respond to your family and friends is the way they will respond back to you when you need them the most.

It seems that in the diagnosis stage of an illness, there is a lot of confusion. It’s a little like putting together a puzzle. A puzzle that is written in medical terms, and the lay person does not understand it. Everyone is hearing terminology that they have never heard before, and nothing seems to make sense. Once those pieces of the puzzle start fitting together, there comes a sense of acceptance.

The treatment phase of an illness is the busiest time. This is when the patient’s support team becomes invaluable. The patient has doctor visits, possible surgeries, children to take care of, meals to cook, and medications to take that may not allow them to do these things. New issues arise such as how much to tell the family. The consequences of not telling them the whole truth may create new problems later on. Patients may feel the need to force themselves to do too much, which not only delays the healing process, but could also give off the impression that they are doing much better than they actually are.

Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them. As a result, the patient might find themselves telling people less and less of what is happening, causing the people around them to back away.
For some, treatment may go on for years, and dealing with it is a delicate balancing act.

After the so called “cure,” the “troops” start backing away, going back to their regular lives. All the emotions the patient unconsciously left on the back burner during treatment are now coming out ten fold. This is the point where the patient discovers the toll that the illness has taken on their life and their family.

Before and during a treatment, the patient has so many people by their side - doctors, family, friends.. but afterwards, they can be left feeling isolated and alone. Add that to the fact that the so called “cure” might not be, and you have a recipe for major depression. Life does not necessarily resume. There may still be medical issues that require treatment, and there is always the possibility of failure.

Dealing with an illness of any kind requires a multi-faceted approach. The patient must be treated as a whole including mind, body, and spirit.

How to Choose a TMJ Disorder Doctor

One of the most difficult parts of TMJ treatment or any kind of treatment is finding a good doctor or dentist.

One thing that is really important is having a primary care physician that you like, trust and who isn’t afraid to say “I don’t know, but I’ll find out”, or “I need to send you to a specialist”. The advantage of having a great primary care physician is that the great doctors know other great doctors. He or she can refer you to the top specialists in the area, and you can be confident that you are receiving the best care possible.

Research

This helps with most things, like cardiologists or allergists, but when it comes to interesting topics like TMJ disorder, many doctors might not know who to refer to, or not know any good physicians in the area. If your primary doctor does not know where to send you, do a search on Google for TMJ disorder specialists in the closest big city. Look at their websites, search their names to see if they have any published research (or any complaints). Refer to the latter part of this article for more in depth information on researching a doctor’s credentials.

Make a list of your priorities. Here is a sample list, but note that your list may be different depending on your particular needs.

1. What characteristics are important to you in a doctor?
2. Make a list of the doctors you find.
3. Check credentials.
4. Contact the doctor’s office.
5. Meet with the doctor.

1) Do you want a doctor who helps you make decisions and explains the choices you have in treatments?

Or would you like a doctor who makes the decisions for you without any discussion as to what the different choices were?

Or, would you like something in between?

This is important because if you will be doing a lot of research on your own, you need a doctor who is receptive to this type of participation. Conversely, if you don’t want to do research, you need to find a doctor who is comfortable with making decisions based on his professional experience.

Would you like a doctor who is involved in the latest research? Or part of a large university? Or a doctor who is more conservative and waits until cutting edge technology is more proven?

2) Resources for locating physicians:

American Dental Association: http://www.ada.org
American Academy of Craniofacial Pain: http://www.aacfp.org
American Board of Orofacial Pain: http://www.abop.net
American Society of Temporomandibular Joint Surgeons: http://www.astmjs.org

Credentials

3) The websites above will give you an idea of the doctor’s credentials, but you can also check on licensing and board certification through websites such as:
DocBoard
Amyrdh
Certifacts

Interviews

4) You might want to call the doctor’s offices that you are interested in and ask some general questions about their policies and rules. Some questions you might want to ask:
1. Office hours
2. Which hospitals the doctor has privileges and where procedures are done
3. After hour protocol and who covers for the physician if he or she is not available
4. How long is the wait to schedule an initial and/or routine appointment
5. How long is a typical wait in the office when scheduled for an appointment
6. What is the cancellation policy?
7. Protocol for refills and new prescriptions over the phone
8. Emergency information

Evaluate and Choose

After your phone interview with the staff and first appointment, ask yourself the following:

Did they:

1. Give me a chance to ask questions?
2. Really listen to my questions?
3. Answer in terms I understand?
4. Show respect for me?
5. Ask me questions?
6. Make me feel comfortable?
7. Address the health problems I came with?
8. Ask me my preferences about different kinds of treatments?
9. Spend enough time with me?
10. Take my concerns seriously?

Remember that a doctor’s staff is a reflection on him to some degree (especially if he is the only doctor in the office). If you can’t get to the doctor when you call in because the staff will not work with you, that may or may not be the doctor for you.

Also, you cannot put enough emphasis on your gut instinct of your initial impression of the doctor. If you feel something is not right, or find yourself making excuses for the doctor or his staff, trust in your instincts and move on to the next doctor on your list.

Hopefully this helps make the difficult task of choosing just the right doctor for you a little bit easier!