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.

A Mother’s Perspective
written by Candy, my Mom

As the parent of a child with TMJ disorder, the first thing I want to say is that I am not perfect. I get impatient, and on occasion exhibit and those behaviors that I condemn in others who don’t live with this situation on a daily basis. I think this is mostly due to frustration, and the inability to stop the cycle that has turned our lives upside down. Having said that, I must also add that I am the eternal optimist. Frustrations are short lived, and replaced with hope. Hope that the next procedure will be the last, hope that my child will once again leave the nest and be whole again.
TMJ disorder has been an all encompassing disease. It has affected every aspect of our lives, but we have learned to cope with the limits it presents.
We have learned not to make plans, but take the days as they come. I will try to run down the list of adjustments we have made, and the coping mechanisms I use to make our lives easier.

*Food - Our refrigerator and cupboards are filled with soft foods such as puddings, potatoes for baking, soups, oatmeal, cereal, fresh fruit for smoothies, and liquid diet supplements. Stacy uses the rubber coated baby spoons.

*Sleep - This has been an area that we have not been able to control. Stacy pretty much sleeps when she can. We have found that using one of those neck pillows with the tiny pellets in it helps relieve pressure because she puts her ear in the hole. Sleep medications have not been able to induce the quality and duration of sleep that she needs because she wakes up as soon as they wear off. Her 8 hours of sleep is usually from cat naps during the day, and a 4 to 5 hour stretch at night. It is difficult for me to adjust to this because out of habit, I find it to be my job as a Mother to see that my children are sleeping at night. My children have made a joke out of me telling them to “go to bed,” something I continue to do even though two of them live hours away.

*Shopping and Lunch - Now you might think I am crazy, but this is a natural part of the Mother Daughter bonding experience. Stacy and I used to shop like it was a job. Now we go to Target, fill a cart with all the things we want (not need), then Stacy tires out, and we abandon the cart, and go home. Thereby fulfilling the urge to shop, without having the expense, and we avoid standing in line. On a good day, we will make minor purchases, and skip going to lunch because a nap is in order.

*TMJ Friends - Stacy spends hours each day on the internet, researching, answering questions, talking on the phone, and writing articles. During my periods of frustration, I get upset that she can do all those things and not participate more in the running of the household. It is difficult for me to hold back my feelings at times, and I become short tempered. However, I do try to understand that it is important for her to feel that she is doing something to help others and take the focus of herself. To her credit, Stacy has given 110% to the organization and has more determination than anyone I know. But dang it, Stacy, can’t you just put your dishes in the dishwasher? (I feel better now…LOL)

*Relationships with family - This is a pretty sticky topic. Stacy has been living with her stepfather Rich and myself on and off for the past 2 years while she undergoes medical treatment. It has been a difficult situation at times. The rest of the family thinks she should be working and living on her own. Sometimes I think if she had another disease, or a growth that they could see, they would be more sympathetic. We have several concerns about their attitudes, and how they will treat her when she has the joint replacements. We live with the fear that they might not be successful. Rich, her Stepfather, has been wonderful and has accepted the situation with grace. Stacy’s younger brother has a hard time understanding and sometimes seems resentful of the attention she gets. I think that his reaction is pretty normal, and I talk to him often about his feelings. Does it help? I don’t know! The relationship Stacy has with her father is a whole article of it’s own, and I won’t even go there except to say that when it comes down to it, he is as supportive as he knows how to be.

*Money - Do you have an hour? Her father contributes when pushed into it, and extracts a price for every penny he gives. He does pay for some of her medical expenses, and is in a financial position to pay all of them.

*Surgeries - This subject is a mothers worst nightmare. Stacy has been through so many, and each one presents a new set of issues that we thought we had prepared for. Pain management is the worst, we fight with nurses, threaten to leave AMA, and still have not been able to conquer this problem. Somehow communication between anesthesiologists, surgeons, and nurses is lost when the surgery is over and Stacy is left in excruciating pain. We go into each surgery with humor.. writing notes on Stacy’s body, reminding the surgeon to wash his hands, noting which side is the WRONG side… you get the picture. We always remember to bring her blankie for recovery. Inevitably, she comes out of surgery in pain and it is never controlled. When she spends the night, I stay with her. I always prepare her room for homecoming.. fill it with her favorite flowers, scented candles, her favorite beech sheets (ask Stacy about these). Of course her laptop is in place next to the bed so she can hop on the board and give you the latest update.

The pain of seeing your child go through surgery does not ease up after the second, third, of sixth time. I have learned to do my crying at night when I am alone, some may view my reactions as being unemotional, but the emotions are there, just under the surface. I have learned to control them before they control me.

In closing, I would like to say that like you, I don’t have the answers. I can only share my side of the story in hopes that those of you reading it will get a better understanding of what the view is like from this side of TMJ disorder.
The only sage advice I can give is to keep your sense of humor, and “GO TO BED!”