111 N. Wabash Ave Suite 2011 • Chicago, IL 60602
The Lives of TMJ Sufferers
Life? What life? l don't have one anymore.
—a 46-year-old woman
I don't live with pain, I live through
it. And every day is an ordeal.
—a 31-year-old systems analyst
Anyone who has lived with, worked with, or
treated a person living in chronic or nearly chronic pain
knows that life can be extremely difficult. Many people living
in pain have only a semblance of a life. And as if the pain
itself were not bad enough, additional pressures and concerns
are thrust on people when the cause of the pain is unknown.
"To be in pain and be told nothing is 'wrong' is one
of the worst feelings I've ever experienced," said one
patient who had been living with excruciating headaches and
neck and shoulder pain for about six years.
During those six years, this patient, Ray Foreman,
lost almost everything in his life: his wife, his business,
and a series of jobs. His social life was a shambles, and
he lived in isolation and fear that he was really "crazy."
Over the period of months he was in treatment for TMJ, he
related many things about his previous existence. "My
wife divorced me because she thought I was using the pain
to avoid her, to avoid success in my business, and to control
people around me with the pain," he said. This is a variation
on a common theme.
Finding a cause for pain, such as migraine,
slipped disc, pinched nerve, or arthritis, enables a person
to put a label on the pain. The sufferer can say, "I'm
in this pain because I have a condition that is causing it.
There's not much they can do for it, but at least I know that
it's 'real.' " This knowledge lessens the strain on a
relationship, career, or social life, although it certainly
doesn't take away the pain.
PAIN WITHOUT REASON
However, many, if not most, of the TMJ sufferers
I've treated over the years have been told that no cause can
be found for the pain. The disastrous results of this message
are manifested in numerous ways. Financial pressures often
mount first, as the sufferer seeks help from one specialist
after another. Meanwhile, the person may also be spending
money on maintenance therapies, trying to keep the level of
pain manageable. When one specialist after another can find
no cause, family members, bosses, and friends sometimes become
Mr. Foreman's wife started out sympathetic
to his problem, and she supported his efforts to find help.
Like anyone close to a person in pain, she was terribly concerned
and feared that he might have some serious disease. She only
began to doubt his pain when the months and years went by
and no cause was found. During the time Mr. Foreman was seeking
help, his symptoms became increasingly worse. His headaches
began in the morning, then built to a crescendo of piercing
pain in the afternoon. By evening, he was forced to go to
bed, although he rarely slept more than an hour or two at
During these episodes, he was unable to carry
on any activity that is a part of a normal life. His formerly
successful restaurant received less and less of his attention.
Business began to fall off, but he was in such intense pain
for such long periods of time that he no longer cared. He
was told that the pain must be of psychological origin. He
began seeing a therapist, but he couldn't begin to explore
any possible emotional reasons for the pain because it was
too severe for him to concentrate on the therapy.
It was at this time that his wife began to
withdraw from him. "Our lives began to revolve totally
around my pain. At first, she began to take days off from
her job to go to the specialists with me, and a few times
I was so bad off that she was afraid to leave me alone. But
gradually things changed. She began to question me about the
reality of my pain. Things went from bad to worse for me,"
What happened to Mr. Foreman is common in the
lives of people with TMJ. After living a joyless life for
several years, his wife confronted him and told him that unless
he could find some help from a pain clinic or a therapist,
she would leave. "We had no social life at all,"
he said. "I had to sell my business at a loss because
I couldn't keep up with it. But even worse, our relationship
deteriorated. She began to think the pain was just a way to
keep from being with her. I had absolutely no sex drive at
all, and she felt deprived of a normal life too. It was awful."
By the time Mr. Foreman came to me, he was
living off his savings after trying to hold down a job and
being unable to manage it. He was still trying to see a therapist—
by now he was so depressed that therapy seemed like a logical
alternative. It was his therapist who referred him for TMJ
DEPRESSION AND TMJ
Not all patients with severe TMJ have lives
as empty as Mr. Foreman's became, but many do. Long- term
pain often causes severe depression, and unless a therapist
is knowledgeable, the pain will be blamed on the depression,
rather than the other way around. Often the patient who has
lived with the problem for a long time begins to confuse cause
and effect, too.
One patient was no longer sure about the cycle
of depression and pain. "There's been so much speculation
about the cause of my pain that I'm no longer sure that the
pain isn't caused by the depression," said Elizabeth
Gomez. She was being treated for the depression with antidepressants,
and for the pain with other drugs. It was no surprise that
Ms. Gomez was confused about the cause and effect of her pain.
The medication had severe side effects for her, including
lethargy and memory loss. Although she managed to hold on
to her job as a legal secretary, it was only because her best
friend helped her out on the job, literally covering for her
and correcting her mistakes. "I can't keep asking her
to do this, and I'm not sure what's going to happen,"
she said. At one point she was considering checking herself
into a psychiatric hospital. "I just wanted to escape
and perhaps even be more drugged up. Oblivion sounded good
Many patients are almost in oblivion by the
time they seek help for TMJ. Even those who are managing to
carry out normal functions often seem not to be "there"
when being interviewed. Many people will fade in and out of
periods of concentration and have enough of a handle on their
lives to be aware of this mental cloud they live in. One patient
gave custody of her two-year-old son to his father because
she was afraid to be with the boy for long periods of time.
"My ex-husband said that I was too out of it to take
good care of him, and he's right," she said.
For some people, the effects of medication
would be worth it if the pain were relieved. But for many
people, the pain isn't gone. It may be slightly dulled, it
may be less excruciating, but it is still there. Often the
medication makes them care less about the pain: it will also
dull them to the rest of life. One patient said, "The
pain drove me crazy, but at least I could feel normal emotions.
I don't cry these days, but I don't feel any joy either."
ACCUSING THE SUFFERERS
Sometimes patients are accused of controlling
others with their pain. One patient who was accused of this
was Sandy Gilbert. Her husband carried a beeper with him at
all times specifically because of her problem. When her headaches
and dizziness came on suddenly, she would call her husband,
and he would "rescue" her.
Almost all of Ms. Gilbert's friends and associates,
and even her children, believed that she was trying to control
her husband with her pain. They believed that these "attacks"
were simply attention- getting ploys. The one person who didn't
believe this was Mr. Gilbert, who not only believed the pain
was very real, but almost never lost sympathy or patience
with her problem. "My wife enjoyed life too much to deliberately
ruin any of it with pain," he said.
Woman are often accused of using pain to avoid
responsibility or sexual relationships. The "Not tonight
dear, I have a headache" joke has become almost a part
of accepted cultural humor. To people in pain who want to
live their lives normally, it is a cruel joke indeed. Patients
whose marriages have been disrupted or even ended as a direct
result of their problems feel only despair at what has happened
Many cases are less extreme, of course. Not
all people with TMJ problems suffer chronic symptoms. Many
patients will have severe bouts with painful symptoms for
a few hours, a day, a week, or months at a time. Then the
symptoms subside, sometimes for long periods, often for short
stretches. Often these people have problems in their work,
relationships, or day-to-day living.
Some people who suffer regular but not necessarily
daily headaches are afraid to make plans because they are
never sure they will be able to carry them out. "I've
stopped making dates," said one young woman. "Cancelling
out once in a while is socially acceptable. But trying to
find excuses to beg off over and over again eventually wears
on people. Most of my friends think I'm at least a bit neurotic.
This label of neurotic is a common one put
on people who suffer from symptoms. People think TMJ sufferers
are complainers or that they are weak; people may even accuse
the headache sufferer of being a hypochondriac. Sometimes
people who have TMJ seem to suffer from more minor illnesses
and health complaints than people who don't have it. Pain
can be exhausting, but it isn't unusual for TMJ patients to
report having trouble sleeping. They may catch colds frequently
or, in the case of women, may have more menstrual complaints.
Often after treatment, patients will report
feeling better in every way—mentally, emotionally, and
physically. Over and over, people say that they have fewer
minor health complaints when they no longer live with chronic
pain. Even though TMJ isn't life-threatening in and of itself,
TMJ does affect overall health and well-being.
Because headaches are such a common health
complaint, they are viewed as normal. Many people feel that
they just have a bit more severe case of this "normal"
occurrence. Often these people live through the pain and by
acts of will rise above it. They continue to lead normal lives,
and in many cases "pretend" their way through it.
One man said, "I never told anyone, not even my closest
friends, that I had headaches almost every day. Not one person
even saw me rub my temples, and I didn't tell people that
I had regular massages because of the pain. They just thought
I was indulging myself in a luxury item. It wasn't a luxury,
it was a necessity."
Many patients are like this man. They don't
complain, they don't talk about the pain, and somehow they
manage to maintain professional and personal lives. Some homemakers
even manage to take care of small children and run a household
while in pain much of the time. These are the patients who
seek help after reading about TMJ in popular magazines or
hearing the subject discussed on radio or television shows.
They identify with the symptoms, and only then do they tell
others that they are like the people described in the articles
or on the shows.
PAIN AND PERSONALITY
A few patients have talked about personality
changes as a result of pain. They felt they were once pleasant
people, able to enjoy others and have friends, but once the
pain became more frequent and more severe, they became irritable
and short-tempered. "My friends know when I'm having
my symptoms," one woman said. "My sense of humor
is gone, and my patience is almost non-existent. I feel like
a different and not very pleasant person."
Patients have reported changing their careers
because the pain they were in made them unable to deal with
people. "I couldn't sell anything to anybody when I was
hurting. I became a proof-reader instead of a salesperson
so I could work in isolation. The pain was still there,"
a woman said, "but at least I didn't inflict my troubles
on other people." This woman rarely talked to anyone
about her symptoms because she thought they were just a part
of normal life and no one could help her anyway.
People who suffer any TMJ symptoms over a long
period often begin to view them as universal. Sometimes a
patient will say, "Doesn't everyone have this popping
sound in the jaws? I've had it for as long as I can remember."
Other people begin to believe that ringing in the ears is
normal. It becomes normal for them, because they have managed
to ignore it and live with the symptoms.
TMJ symptoms strike many people. Almost everyone
knows what a minor headache feels like, or shoulder and neck
pains after a long, tense day. Most people experience these
things once in a while. Minor symptoms can come and go and
never have an impact. For these people, the vast majority,
TMJ is insignificant and most likely needs no treatment. But,
when pain begins to take over a person's life, all kinds of
changes follow. It's tragic to see and hear so many stories
of destroyed marriages and careers. It's tragic to know that
many people are walking around in pain and believe that nothing
can be done about it. However, treatment can help people whose
pain is caused by TMJ. Most can become virtually pain- free,
and most can put their lives back in order. Many patients
refer to treatment as "getting my life back."