The January 12th meeting of the East Bay Headache Support Group, the first meeting of our fourth year, was held in the Ball Auditorium at John Muir Medical Center with 34 people in attendance. Kathy Anolick, M.S., M.F.C.C., a licensed marriage, family and child counselor

in private practice in Concord and Oakland, spoke to the support group about the emotional impact of headaches. Kathy graciously wrote up her notes and gave them to us for this edition of meeting notes, as follows:

Most people do not expect to be ill or disabled, and go through their lives taking their health for granted and expecting to continue to be healthy. When illness strikes—a cold, a flu, a broken bone—we have an expectation of recovery. With a broken bone, there is a fairly predictable course of healing—in six weeks the cast comes off and the bone is mended. With a cold or flu, people expect to be miserable for a few days and then go back to "normal." (Note that health is viewed is normal, illness is abnormal.) People often complain bitterly about a cold or flu that lingers for a couple of weeks or longer.

With chronic illness, the expectation of healing/recovery is thwarted. With headaches, your expectations of recovery depend on the types of headaches you have and how old you were when you first began to experience them. If your headaches began in childhood, it’s possible that you long ago came to see recurring headaches as "normal" and don’t remember a hope or expectation of complete recovery. However, if your headaches started later in life, you may be able to remember your first headache or headaches and your expectation of recovery. Perhaps you believed that over-the-counter medication or something from your doctor would alleviate them, and that you would return to your usual life and functioning. When your original expectations of recovery didn’t prove accurate, you may have hoped that a different medication, the proper rest, avoiding certain foods, etc., would bring about a complete recovery. However, as time went on and the headaches continued to recur, it became clear that you were dealing with a chronic illness. At that point in any chronic illness, uncertainty, fear and frustration set in. You don’t know when you’ll get better, if you’ll get better, or how better you’re going to get. This uncertainty and the loss of a hope or expectation for recovery is one of the most difficult aspects of any chronic illness.

In addition to the uncertainty about your future physically, comes the uncertainty about other aspects of the future. We all have expectations for the future, even if they’re vague. We might not have specific goals, but we have general ideas, e.g.in X number of years, I’ll be able to take a longer vacation, buy a new house, be able to retire, go back to school, enjoy the fruits of my labor, etc. With a disability, we face the loss of what author JoAnn LeMaistre calls an "expectable future."

With headaches, there is often a cyclical aspect to the illness—you have no headaches for a few days or longer, and then another one. During some periods, the headaches may recur less frequently, but then they recur more frequently again and/or with greater intensity. Sometimes the cycles can be controlled a bit by your behaviors (e.g. taking better care of yourself, limiting stress) and sometimes they can’t. When new medications or approaches become available, some of them are effective and some of them are not. In any case, the unpredictability of the illness can be very demoralizing, and the cycle of hope and disappointment can seem never-ending. When new medications and approaches are effective, it is easy to again hope that you are finally "cured" and to forget that the positive effect of the medication may be undermined by slacking off in taking care of yourself in other ways. This can lead to overdoing it and ending up with significant pain, and experiencing again discouragement and disappointment.

Because headaches are cyclical, for many of you there are times when you are not in pain. But when you are in pain, as you know, it completely interferes with your life.

When present, pain is a constant presence. It’s draining, exhausting. It interferes with whatever you’re doing (if you can even do anything). It may be possible to be distracted from it somewhat, but it’s there, affecting everything. Whatever you are trying to do, the pain is there as a third entity. You, your activity, and the pain. You, your thoughts, and the pain. If you are trying to have contact with another person, it is you, the other person, and the pain.

At times, it may be just the pain, not as a third entity, but as the only experience you are having. Pain is impossible to really explain or describe to others, and people who have had the good fortune to have not experienced much pain in their lives do not really understand what it’s like, though they may try.

One of the unique aspects of dealing with headaches has to do with the experience of being fuzzy-headed. Even if the pain isn’t severe, having headaches affects one’s ability to concentrate and to think. Our culture places a high value on the ability to think and reason.
"I think therefore I am." Does this mean that if you are having difficulty thinking you cease to exist? To have times when you can’t think clearly is extremely frustrating, can affect work, decision-making, family relationships, and one’s sense of self. It’s not unusual to feel inadequate and incapable when you can’t think clearly.

In addition, in our culture, who we are and what our value is is often defined by what we do, and by our ability to do for ourselves. With headaches, sometimes you can "do" (function, follow through, keep commitments, etc.)—and sometimes you can’t. Most of us pride

ourselves on being reliable, capable, able to follow through, and independent. When you know in advance that any commitment you make may have to be altered if you don’t feel well, and that you may need to ask others for help, it’s hard to maintain a sense of yourself as valuable, competent, dependable, and whole.

Following are the range of painful emotions that can accompany this experience:

Powerlessness, Guilt, Uncertainty, Anxiety/Panic, Hopelessness Frustration, Feeling out of control, Anger/Irritability, Shame, Isolation, Inferiority, Withdrawal, Dependence, Depression: "You’d have to be crazy NOT to be depressed with chronic headaches."

Feeling "blue," hopeless, "depressed"

Fatigue, lethargy, lack of energy, lack of motivation

Increase/decrease in sleeping

Increase/decrease in appetite

Difficulty concentrating

Hypersensitivity: easily hurt, crying easily, irritability, rage

Ballooning of negative thoughts: feeling worthless, putting yourself down

Suicidal thoughts: wishing to be dead, imagining your own death, planning to kill yourself

If you have many of these symptoms, you may want to consider seeking psychotherapy. If you have suicidal thoughts, and especially, if you have a plan of how you would harm yourself, I strongly recommend you seek professional help and not delay in doing so.

So far I’ve been taking primarily about the individual experience of headaches. I hope that I’ve fairly accurately represented what many of you have gone through. Now I want to talk more about the interpersonal, about the ways in which having headaches affects relationships with other people, and the interplay between feelings about yourself and the illness, and others’ feelings, thoughts and judgments about you and the illness.

I was talking earlier about the cyclical nature of headaches, the ups and downs. This can lead to blaming yourself, and being blamed by others for your illness. When things appear to get better, and then get worse, it’s easy to doubt yourself, to feel like you’re crazy, to feel like you aren’t trying hard enough, to wonder if you’re somehow doing something to keep yourself sick. Even if you don’t have these doubts, and have come to respect the validity of your illness, others often do have doubts, and do question the validity and reality of your illness. How many friends, relatives, coworkers, and unfortunately, doctors and other medical professionals, have stated to you, directly or indirectly, that your headaches should be better by now, or that they believe they are psychological in origin, or that you are feeling sorry for yourself and should just move on? It’s very easy to feel angry, misunderstood, isolated, etc. in response to these types of comments, and I think it’s really important to be able to remind yourself (or be reminded by someone else who believes it), that you are not to blame for your illness.

Without having had the experience of severe pain and limitation, most people "just don’t get" what your suffering is like. If their experience has been that they always get over illnesses relatively quickly, they will have the expectation that you should get better, and that if you haven’t, you are malingering. Headaches are an "invisible disability" with no outward signs of injury, like a cast on your leg. To others you may "look fine."

As a person with a chronic illness, you represent their worst fears. If you can look fine and yet be in so much pain, if you can get ill and not get better, the same thing could happen to them. Those who are healthy take their health for granted and often don’t want to think about the possibility that they could become disabled. So, they may push you away to protect themselves psychologically. Believing that you have control of your illness and could get better if you wanted to, helps them maintain the illusion that their own health and wellness can be controlled by them. They are frightened by the unpredictability of your illness, just as you are, but they can choose not to deal with it.

One way that people express their discomfort is by going into the "fix it" mode. "Try this,

do that." This is usually in part well-meaning, because they don’t want to see you suffer, but again, the implication is that if you’d only try harder you could get better. Sometimes the suggestions are even potentially helpful, but a long list of suggestions can be overwhelming. And the timing may be off. You may want a listening ear, to talk about how you’re feeling, to have someone just listen, take it in, and try to put themselves in your shoes. For friends, relatives, etc., it can be too scary and painful to truly listen to what you are going through.

Spouses: Having one disabled spouse puts a great deal of strain on marriages/primary relationships. The spouse or significant other is called upon to do more—more of the household chores, more childcare if there are kids, often the greater burden of bringing in income. Some spouses are more able to fulfill this role than others. The person with headaches can feel a great deal of guilt about doing less, resentment and hurt if the partner isn’t willing or able to fill in or be a caregiver. The caregiving partner can feel resentment, get overwhelmed or exhausted, feel powerless to truly help, and can feel unappreciated at times. The person who is ill needs to be able and willing to ask for help and deal with feelings of dependency.

Single Adults (without children): Brings both positives and negatives. It can be a relief to not have to deal with the relationship dynamics outlined above. Sometimes, this means it’s possible to focus on yourself and devote more time to your own healing. On the other hand, there is no one immediately there to help; it’s more complicated to call on friends and family members to come over and help. And, there can be great fear about whether or not a relationship is possible in the future, the fear being that no one would want to become involved with an ill person.

Kids: If a single parent, the responsibility of taking care of kids when it’s hard enough to take care of yourself can be overwhelming. As I said before, if you have a spouse, the person who is not ill at times has to take on the greater burden of the childcare. And, it’s hard to explain to kids, and hard for them, especially younger ones, to understand. Depending on their age, they can help out. This can be beneficial to kids, in terms of their own growth and greater understanding of the realities of life, but it can also lead to a sense of over-responsibility. And, of course, as a parent, you don’t want your child to feel unloved or rejected, which they might at times feel because they don’t understand. And, if a child also has headaches, any family dynamics can be magnified because more than one person is sick and there is a greater strain on the family unit. And, it’s likely that you would feel great sadness and fear for your child with headaches, knowing what you’ve been through and what that child is likely to have to deal with.

Extended Family/Friends: We all have roles in our extended families and with our friends, and they have expectations of us. It can be hard to say no, to set limits, to have to continually explain, to have to frequently ask for help. Some family members and friends can understand, or try to, and really be there. Others don’t do a very good job.

Co-workers: Can feel envious of you missing work, leaving early, etc. Often they will assume or imply that you are malingering and even state that you’re lucky to be able to work less then them.

Healing can happen on many levels—physically, often not in the sense of a complete "cure" but in terms of less pain, more ability to function. Healing can also happen on the psychological/emotional/spiritual levels, which is what I want to talk about. What I mean by

healing is moving from being overwhelmed by limitation and by the emotions I’ve been describing to feeling a greater sense of acceptance, well-being and peacefulness.

Allowing others to help, to "be there" for you. Asking for help. Talking about and expressing the range of feelings involved. Find those who will listen: open and available family and friends; a therapist (individually or with your spouse or family); a clergy person or religious counselor; in support groups such as the East Bay Headache Support Group; in smaller therapy groups in which all members have some kind of chronic illness.

Grieving is a natural response to a loss. There are many aspects of grief, including crying, sadness, depression, rage, anger, and acceptance. Some grieving needs to be done alone, some with others who are also grieving and/or are supportive. Acceptance is often considered the endpoint of grieving, but acceptance may come and go, and some grieving may have to be done every day. Reaching acceptance does not mean becoming resigned, but rather acknowledging the reality of the situation.

Anything you can do to enable you to have a greater sense of mastery over your headaches and over your life can add to a greater sense of well-being. This includes things like attending meetings like this and gathering information, pacing yourself in your activities, avoiding activities which you know are likely to bring on headaches, etc. This also includes being aware of and giving yourself credit for small triumphs, moments of joy, realistic hope.

Others who have dealt with/are dealing with headaches or other chronic illness can be a source of inspiration. If they have achieved less pain, more acceptance and a greater sense of equanimity, you can learn from them and move forward. Support groups like this and therapy groups can be places where people are models for one another. Books and programs about people dealing with illness and disability can also provide models.

Some or all of these may be useful:

Biofeedback Stress Reduction

Meditation Yoga

Hypnosis Visualization

Sense of Humor Patience

Addressing negative beliefs, fears and attitudes

You are not your body.

You are not your headaches.

You still have a lot to offer even though (perhaps in part because) you have this illness.

Part of your personality and self image is very altered, but much remains intact.

Identify and celebrate your strengths.

The following books may be useful:

Beyond Rage, the Emotional Impact of Chronic Illness, JoAnn LeMaistre, Alpine Guild, 1985.

Full Catastrophe Living, Jon Kabat-Zinn, Delta Books, Dell Publishing, 1991.

Healing and the Mind, Bill Moyers, Doubleday, 1993.

The Highly Sensitive Person (Elaine Aron, PhD, publisher not available)

Spontaneous Healing, Andrew Weil, Alfred A. Knopf, 1995.

Tuesdays with Morrie, Interviews with Ted Koppel (author, publisher not available)

At the conclusion of her presentation, Kathy asked for questions or comments from the audience.

One participant commented that the cyclical aspect of her headaches is the hardest to deal with, and Kathy answered, "It is very discouraging. Hope helps, but it allows for disappointment also." Another member of the audience commented that hope has to be balanced with a sense of reality. We need realistic planning.

"Knowing what I’m going to do when I get the next headache helps me get through the pain and despair," commented another audience member. Kathy added that having a plan is a good example of acceptance.

Kathy was asked, "Where can I go for help?" She answered by listing the various types of mental health professionals available, such as a Marriage, Family and Child Counselor, Licensed Clinical Social Worker, psychologist, and psychiatrist. She suggested we ask our friends, doctor, or EAP (Employee Assistance Program) at work for recommendations.

One audience member mentioned a lecture on Transcendental Medication that would be presented this week in the area.

Kathy mentioned there is a support group in Pleasant Hill for people with chronic pain. She said she would get back to us with more information about this group.

As a final comment, Kathy talked about the issue of any one person having more than one illness, for instance, chronic headache and breast cancer. The issues are magnified in a circumstance like that.

Is it valid to feel badly? Yes, it does affect your life. Kathy said that people with musculo-skeletal problems often play down their own difficulties because it is not life-threatening. They are similar, but they’re different and they’re all valid. She talked about a friend who is a cancer survivor, but now is depressed because her foot hurts.