In 1995, TMJ patients Terrie Cowley and Jennifer Hutchinson with The TMJ Association along with Dr. Harry Prosen, Professor and Chairman of the Department of Pscyhiarty and Mental Health Sciences at the Medical College of Wisconsin, wrote the following article based on personal experience, but more important, on what patients were telling them about how TMJ affects their lives. Unfortunately today, TMJ patients continue to experience what is written in this article.
The Unforgivable Injury
TMJ disorders can drastically alter the life patterns of patients, their families and loved ones. Regardless of the source of the hurt, pain or sadness, everyone experiences grief differently. In a matter of months or overnight, the patient becomes a totally different person, experiencing unexpected and unfamiliar physical limitations and accompanying fear. He or she is forced to give up not only part of oneself, but also the idealizations and hopes one has had. If these losses are not replaced with hope through understanding and acceptance, everything seems hopeless. Unfortunately, for TMJ patients there are few answers and little that makes sense, which makes understanding, and therefore acceptance, difficult.
Table of Contents
Family relationships change in countless ways. Frequently, people are forced to give up jobs and promising careers. Some have abandoned the idea of having children. Patients tell us how much it hurts to see their children depend on the other parent to fulfill needs they previously met. The well spouse is forced to assume household and child-rearing responsibilities, and often has the added pressure of working longer hours or holding down several jobs to replace the lost income needed to pay the mounting medical expenses. Many families have had to develop “second careers,” battling insurance companies and creditors. Unfortunately, many marriages are unable to survive all of the stress and adjustments.
We sometimes hear from parents of adult TMJ patients who have become caretakers again. Some have depleted their life savings. A mother told us she and her husband spent their pension fund of $300,000 on their daughter’s multiple surgery bills. They are now bankrupt and caring for their 30-year-old daughter in their home.
Tragically, the children of a parent with TMJ sometimes find themselves “parenting” at a time when they themselves need nurturing. Daily, they watch the pain and effects this illness wreaks on the sick parent. They see the changed face and emotions of the parent, and they do not understand what is happening. And some face the unimaginable fear of losing their mother or father. A woman told us her five-year old son didn’t want to go to school for gifted children because he wouldn’t be able to go home during lunch “to check on Mommy.”
Cancel, Cancel, Cancel
Unpredictability is the mainstay of TMJ patients. They are unable to plan simple outings, such as going to a movie, let alone a vacation or other more demanding family activity. With a disorder that can wax and wane within hours, plans with family and friends frequently have to be altered or canceled on short notice. Most TMJ patients live with guilt over disrupting the entire family because of their illness. They also dread the inevitable days of recovery they will face if they participate in family activities. And it is virtually impossible for family members and friends not to respond to these limitations with anger, as well as guilt of their own.
An inherent problem experienced by people with TMJ pain and dysfunction is the effect the illness has on the sex lives of the patient and partner. The once pleasurable sensations of being touched, hugged, kissed, having one’s face stroked, and all the things that are an integral part of lovemaking and affection sharing, are now for many excruciatingly painful. Spouses frequently say they are hesitant to make sexual overtures for fear of physically hurting the sick partner or appearing insensitive to his or her pain.
TMJ patients must deal with dramatic changes in their appearance resulting from the disorder, treatment, and nutritional problems. Facial deformities can occur, causing diminished self-esteem and feelings of shame and revulsion. Some describe the shock of looking in the mirror and seeing someone they no longer recognize. And there is the ultimate shame of being stared at in public. For some people, along with the facial deformity, the body image is also distorted. For example, those taking prescribed medications, such as anti-depressants, experience weight increase over a fairly short period of time. One woman told us she gained so much weight she could no longer wear any of her clothes, couldn’t afford to buy new ones, and now lives in her husband’s pajamas. Another, facing the twelfth operation, began eating uncontrollably, gained 30 pounds in two weeks, and sobbingly told us she felt certain she would never eat again after the next surgery. On the flip side, many patients have such severe difficulty chewing and swallowing that they live on liquids, blended food or baby food for years. Some are even surviving on feeding tubes. They experience digestive problems and fight a constant battle to keep weight on and obtain minimal nutrition. Finally, there are those patients fortunate enough not to have experienced either facial deformities or weight loss or gain. These people are stigmatized because they look perfectly normal and therefore no one believes they are experiencing a disabling disorder.
Eating Out/Social Life
To further add to the isolation already imposed on their lives, many TMJ sufferers are denied dining out – contemporary society’s way of interacting in a social or business manner. Some are physically unable to go out and eat in a restaurant. Others who might feel like going out suffer the embarrassment imposed by their masticatory inadequacy, such as having food fall out of their mouths or choking. Many of these people have lost valuable friendships and are unable to participate in daily experiences and pleasures normal people take for granted.
"Why Don’t You Get Better?"
An incredibly damaging component of this disorder is that most people believe it is psychogenic. Many TMJ patients suffer through years of being told that their medical problems should have been resolved, and because they haven’t, their illness is psychosomatic, or imagined. They are made to feel like hypochondriacs and/or are perceived as hypochondriacs.
Additionally, mainstream media generally inaccurately reports on the relationship between TMJ pain and stress, proposing that the sufferer is simply stressed and depressed. (Depression is secondary to the problem in nearly all cases and, like anger, inevitable after a period of time.) Some doctors make trite suggestions to their patients – that they change jobs, change spouses or take a vacation. They offer hope from a limited number of suggestions as the life of the afflicted person crumbles.
Whether resented or believed, patients who are desperate will often succumb to the recommendations of their doctors, even though these professionals seem oblivious to the fact that their patients are living in a state of chronic pain and masticatory dysfunction. They are being treated in a system where no one professional takes responsibility for the patient – a system of an unbelievable number of referrals with unscientific, unproven treatments (and hope) sold to the patient by each referring physician. In many cases, patients end up worse and more destitute, yet they grasp for hope with each referral until some become gun-shy, resisting all treatment. In fact, some even refuse medical treatment in life-threatening situations.
One patient wrote, “All these years, he told me my pain was psychosomatic … so, I continued with his treatments – counseling, physical therapy, biofeedback, TENS, hypnosis, 13 surgeries, etc … I cannot believe I’ve been deceived all these years. The only way I learned about my condition was out of a magazine.”
Feeling Betrayed by Doctors/Dentists
"It’s All in Your Head"
Standard operating procedure for TMJ treatment is the inclusion of a psychological evaluation and/or counseling. Yet many people tell us the psychologists don’t seem to understand their concerns and feelings. Patients talk about jaw pain, and the psychologist believes they were sexually abused. Or they talk about how this disorder is destroying the family, and the psychologist believes marital stress is the cause of the disorder. Many patients say they just can’t win. If they walk into the doctor’s office for an appointment looking respectfully dressed and well groomed, their pain is doubted. If they walk in looking how they feel, their pain is still doubted and they are accused of being depressed. The present system feels compelled to find flaws in the individual to blame for the disorder, totally oblivious to the real problems. The medical quagmire the patient gets caught in introduces a new set of psychological factors not yet addressed in this area of medicine – how to treat the psychological trauma resulting from failed, harmful and/or shotgun treatment which leads people on the medical merry-go-round and ends in chaos and destroyed lives. Many patients tell us they feel like trapped animals with nowhere to turn for help and no one who understands the psychological support they really need.
The danger of this type of approach has been driven home to us tragically and all too often. For example, a multi-surgical implant patient visited her doctor with her husband. The oral surgeon impressed upon them that her problem was strictly psychological, not a result of the surgeries or implants. When they returned home, the husband told his wife, “He is the authority. Who should I believe – you or him?” The wife walked into the bedroom and shot herself.
Another patient told us he was kept in a mental health facility for three weeks because they thought he was having a panic attack. He said: “Of course, I was panicked because I was having this incredible pain, they wouldn’t believe me, and they kept telling me it was psychological.” A wife of a TMJ implant patient told us she did not believe her husband could possibly be experiencing the amount of pain he said he had. After all, no professional would validate his pain. So she returned to graduate school, fully intending to divorce her husband upon graduation. She didn’t, but over the last ten years, she has had two major nervous breakdowns and she and her husband “have lost everything.” They eventually learned the dangers of implants through the media and, armed with the truth of what happened, are trying to sort out their lives. What we are hearing from TMJ patients is that they are desperately trying to make someone understand the essence of their problems. Yet what they say is continuously distorted by professionals who have pre-conceived ideas and do not even begin to comprehend what their patients are feeling.
Not only have TMJ patients been betrayed by their doctors, they feel betrayed by professional dental organizations. The American Dental Association has shirked its responsibility by failing to make TMJ a specialty and to provide uniform guidelines based on scientific criteria, not “state-of-the-art/anecdotal information.” This lack of standards creates more controversy, havoc, and ultimately, more harm to the patient. In the case of the implant patients, the behavior of the American Association of Oral and Maxillofacial Surgeons (AAOMS) has been described by many as shameful. Even Congress, in a letter dated December 14, 1994, was compelled to demand explanations from AAOMS concerning such issues as the lack of research, the use of illegal and/or experimental devices, failure to contact patients with implants, abandonment, and the absence of financial assistance for TMJ patients, particularly those who need to have implants removed.
Perhaps one of the hardest betrayals for many TMJ patients to accept is that by our government – a government that established the U.S. Food and Drug Administration to protect consumers, and the National Institutes of Health to conduct research that would ultimately lead to safe, effective treatments for all TMJ sufferers. Obviously, both of these agencies have failed to do their jobs. Additionally, device manufacturers appear to have done no animal, biomechanical, or immunological experimentation (let alone human studies). Insurance systems have further contributed to the problem through haphazard coverage of treatment. “An unforgivable injury is a profound and irreversible assault on the fundamental belief system of the person who has been injured (Flanigan, p. 26). … The loss of the belief in trust itself is like the loss of beliefs suffered in other unforgivable injuries. It goes to the core of a person and how he thereafter views his world” (p. 51). Ms. Flanigan goes on to say, “By definition, unforgivable injuries destroy beliefs about oneself, other people, and the world in general” (p. 52). Her sentiments sum up the emotions expressed by many TMJ patients.
Exposing the Truth
Clearly, TMJ touches the lives of patients and those around them in innumerable ways. Many patients live in such excruciating agony that every day is a battle against suicide. They exist in a world where every minute seems like hours, and they can only count the time until the next pain pill. And they live in a constant state of terror, wondering how much worse it can get and how much more they can take. Some go from doctor to doctor, feeling as though they are “groveling” for medication from professionals who do not believe their pain is real or severe enough to warrant drugs and who, in many cases, refuse to prescribe much-needed painkillers. Some patients say they are reduced to looking for relief through street drugs. This is not only demeaning, but dangerous and uncalled for. After writing this article, we asked several people to read it. Most reacted with, “This is so depressing – can I sign my name to this article? This is me.” The state-of-the-art of science and treatment of this disorder are depressing. That TMJ is in a rather horrible state of affairs cannot be denied. And there is no way we can lie about what we are hearing or legitimately keep this information secret.
Our fight has been to expose the truth about TMJ disorders as we the patients experience it. The truth is not pretty, but perhaps articles such as the ones we have been writing are stripping away, bit by bit, the falsehoods and cover-up that we all have experienced in our lives with TMJ. And maybe if friends, family, and treating professionals read this article, they will gain insight into who we are and what we are going through.
This article is probably the first written about how we really feel and how we are treated. The importance of this is that TMJ is coming out of the closet. If we all support each other and begin speaking these truths with one voice, it won’t be long before we stop hearing, “Nobody really understands,” or “I can’t tell anybody I have TMJ. I’m too embarrassed.”
As with many issues people in the world face today, we have hope that the campaign we have embarked upon is making a difference. All across the country, people are joining support groups to be heard as one voice, to support each other, and to demand good science and humane treatment. There is strength in numbers. This is our hope for the future. The hope is in our hands to help turn this tragedy around and make it into something positive.