Fall, 1997

Coping: Depression in Cushing's Syndrome: 'Atypical' or Melancholic?

by Lorah Dorn PhD, RN, CPNP & George Chrousos, MD

From the literature and from anecdotal reports, depression is said to be common in patients with Cushing's syndrome (CS). Certainly, patients with CS know this well. Depression may be seen in over 50% of patients in active Cushing's. In this column we will address the following: 1) What is depression? 2) Is depression in CS different from other kinds of depression? 3) Why is depression different in CS? and 4) What can be done about it?

What is depression?

Depression is not just one disease or one syndrome. There are several types of depression. First, someone can have either "depressive symptoms" or a diagnosis of depression. Depressive symptoms include depressed mood, loss of interest or pleasure, change in weight, change in sleep, fatigue, as well as other symptoms. Second, a diagnosis of depression (Major Depressive Disorder, MDD) is usually made by those in the mental health profession, based on criteria outlined by the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). A diagnosis of MDD is made when a specific number of these symptoms occur for at least two weeks or more. In the most strict sense, one could not be diagnosed with MDD if a disease (like CS or hypothyroidism) is "causing" the disorder. Certainly, that doesn't mean that patients with CS are not depressed. We know otherwise from clinical experience and research.

Is depression different in CS?

There are several subtypes of MDD, but we will focus on two that are more relevant to CS. One is melancholic depression, characterized by depressed mood as a feature and loss of pleasure in most activities. There also is weight loss and a decrease in the time one sleeps. The other type is atypical depression, also characterized by depressed mood, but with the ability to react to pleasurable events with a favorable response. Patients with atypical depression show increased fatigue, weight gain, and excessive sleeping; symptoms opposite of those patients with melancholic features. In the general population, melancholic depression is the most prevelent. We conducted a research study on 33 patients consecutively admitted to NIH for treatment of CS, evaluated each of these patients for depression while their CS was active, and at various time points following corrective treatment. Several important points emerged from this research.

As shown in Table 1, the majority (66.7%) of Cushing's patients clearly demonstrated psychiatric symptoms at some time during their illness, while the number of patients with no diagnosis of psychiatric symtoms was much lower (30.3 %). Our research also showed that the most common type of psychiatric disorder in patients with CS is atypical depression. In the 33 patients with active CS in our study, 17 or 51.5% had atypical depression.

Appoximately 17% of these patients also exhibited symptoms of both atypical and melancholic depression, while one patient with CS exhibited only melancholic depression. Another 29.4% of these patients had other diagnoses, such as panic attacks, anxiety, and drug and alcohol abuse.

Why is depression different in CS?

From our research and the synthesis of others, we have surmised that depression represents either over- or under-arousal of the stress system. In a simplistic sense, the stress system includes many neurotransmitters and hormones from the brain, pituitary gland, and adrenal gland that work together to help people respond to physically or psychologically stressful situations. Some of the changes that occur during arousal or activation of the stress system, include changes in CRH (corticotropin releasing hormone). A part of the brain releases CRH, which then acts on the pituitary gland to stimulate ACTH release. In turn, ACTH acts on the adrenal glands to increase cortisol production.

In melancholic depression, the stress system is overactive and CRH is increased. This increase may well bring about some of the symptoms of melancholia. In atypical depression, like in CS, there is under-arousal of the stress system and lower CRH. Due to increased ACTH and cortisol, patients with CS do have lower CRH (measured in spinal fluid). However, there has not been a study that has simultaneously measured CRH and depression in patients with CS. It is also important to remember that while CRH plays a role, depression most likely is not "caused" by just one factor.

What can be done about depression in CS?

No matter what kind of depression a patient with CS has, it should be treated. It is important that the patient be evaluated and followed, from someone in the mental health profession. Helpful therapy may include individual or group therapy, but sometimes antidepressants may also be necessary and should be prescribed by a psychiatrist. The therapist should also maintain close contact with the endocrinologist so he/she understands the disease and treatment from an endocrine perspective. Treating depression in this instance, is a team effort involving the patient and family, the mental health therapist and the endocrinologist. Patients and families should ask questions about the therapy and be informed about what to expect with a medication, and when it should begin working. Sometimes a different anti-depressant will need to be prescribed because the same medication doesn't always work in the same way for everyone. So, patients and families will need to keep the therapist informed of progress, as well.

Editor's note: Lorah D. Dorn, PhD, RN, CPNP is an Assistant Professor of Nursing and Psychiatry at the University of Pittsburgh. Dr. Dorn conducted research on Cushing's syndrome and depression in conjuction with Dr. George Chrousos, MD, who is the Chief of Pediatric Endocrinology at NIH in Bethesda, MD. This research was published in Clinical Endocrinology, Volume 43, pp. 433-442, 1995.

Table 1: Psychiatric diagnoses of 33 Patients with Cushing's Syndrome
	n	%
Diagnosis before Cushing's syndrome	6	18.2
Diagnosis during Cushing's syndrome but prior to admission at NIH	15	45.5
Current diagnosis when admitted at NIH	18	54.6
Total: during Cushing's or at NIH admission	22	66.7
No history of diagnosis	10	30.3

Row n's and percentages represent the number of patients out of 33 at the specified time points. Therefore, the percentage column does not add up to 100.
This table was reproduced with permission from Blackwell Science Ltd.

Spring, 1998

Coping: Depression after treatment of Cushing's Syndrome

by Lorah Dorn PhD, RN, CPNP & George Chrousos, MD

In the fall issue of the newsletter, we addressed depression in Cushing's syndrome (CS). The focus was on subtypes of depression, how different subtypes might be expressed symptomatically, how they might be biochemically different, and what treatment may be effective for depression in CS. This column will focus on our research findings on the course of depression following the treatment of CS.

Although for patients with Cushing's syndrome, a "cure" can be obtained immediately through surgery, we know that the process of returning to a healthy state takes some time. For example, the return of functioning of the hypothalamic pituitary adrenal (HPA) axis, may take up to a year and patients remain on glucocorticoid replacement until that time. Resuming normal psychologic functioning after correction of hypercortisolism also appears to be a lengthy process. In our longitudinal study of 33 patients with CS, 54.6% met diagnostic criteria for a psychiatric illness before their treatment. The majority of those had atypical depression but there also were a few cases of hypomania, panic anxiety, or drug and alcohol abuse. At 3-months post- treatment, 53.6 % of the 28 returning patients met criteria for a psychiatric illness. Most were diagnosed with major depression (MDD) (32.1%) but some had atypical depression or anxiety disorders. Importantly, three patients reported being suicidal. At 6-monthspost-treatment, there were fewer psychiatric diagnoses (36%). Of the 25 returning, 32% had atypical depression. Three patients met criteria for MDD and one of these reported being suicidal. One year following treatment for CS, 7 (24%) of the 29 returning subjects still met criteria for a psychiatric illness. Again, atypical depression was the most common. One patient continued to report being suicidal. Thus, the general picture of the psychological profile of CS patients after correction of hypercortisolism is one of improvement. Across the year, there was an improvement in moods and feelings by self-report checklists and also a significant decrease in the number of patients with atypical depression. Interestingly, across the study, 4 patients who reported no psychiatric disorders before or during CS, developed a psychiatric condition after treatment for CS and during their recovery phase.

To look for recovery of the HPA axis, an ACTH stimulation test often is done during the convalescence. The ACTH test shows if the axis is returning to its normal state with the goal being discontinuation of glucocorticoid replacement therapy. A normal cortisol response was obtained by 13.6% at 3 months, by 21.7% at 6 months, and by over 50% at 12 months post- treatment. We thought that whether one had a normal cortisol response might be related to better psychological functioning. This, however, was not the case. There was no significant relationship between recovery of the HPA axis by ACTH testing and better psychological functioning. We do think that having more patients in the study may provide more information about this relation.

To look at the relation of recovery of the HPA axis and psychopathology in another way, we asked the following question: Is the actual spontaneous morning cortisol level of the patient related to psychological symptoms? Using standardized checklists, we found that at 3 months post-correction, there was no relation between cortisol level and psychological symptoms. However, at 6 and 12 months, having a lower morning baseline cortisol (before the ACTH stimulation tests) was strongly related to having more psychological symptoms. Also, 6 months and 12 months after correction of hypercortisolism, patients with higher cortisol levels felt more vigorous. It is important to remember that just because there is a relation (correlation) does not mean that cortisol is causing this relation.

Why might psychopathology remain even after correction of hypercortisolism and why might new psychopathology appear? To answer this, we can only speculate. Further research can provide more conclusive evidence. It may be that the CRH neuron is the last part of the axis to recover and CRH, rather than cortisol, may be responsible for mood disturbances. Also, it is too simplistic to think that only one biological factor contributes to a behavior. Most likely it is multiple factors such as several hormone systems acting in concert and factors such as social support or stressful life circumstances.

What can be done about new or continued psychological problems after correction of hypercortisolism? We would reiterate our suggestions from the previous column stressing the importance of being evaluated and followed by someone in the psychological profession. Your therapist and endocrinologist should have continued contact with each other (as well as with you), in order to adjust therapy as necessary. Helpful therapy may include both supportive psychotherapy and appropriate medications. We would like to stress to patients and family members, the importance of recognizing psychological problems in patients with CS, not only before treatment but after correction of hypercortisolism as well. The fact that some of our patients developed new psychological problems such as panic attacks or being suicidal is worrisome, if not identified and monitored.

Further information on this study can be obtained in: Dorn, L.D., Burgess, E., Friedman, T., Dubbert, B., Gold, P.W., & Chrousos, G.P. (1997). The longitudinal course of psychopathology in Cushing syndrome after correction of hypercortisolism. Journal of Clinical Endocrinology and Metabolism, 82:912-919.

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July, 1998

Coping: Cushing's and Friendship

by Anna Maurer

I'm not a psychologist, a psychiatrist or a therapist. I don't have any formal training, and I certainly don't have any experience with being diagnosed with a rare, confusing, absolutely frustrating condition. When my best friend, Mary, told me she was diagnosed with Cushing's, my first thought was "thank goodness - there is an answer!" My second thought was "so, exactly what is Cushing's, ACTH, cortisol etc.?" and we've never looked back. Early on, Mary told me how some Cushing's patients lose their friends because of their illness, retract into themselves and are left without a support network, or a close friend to help them through their ordeals. Mary tells me I really helped her deal with it and that perhaps if I shared how I was a friend, it might help others who know and are friends to Cushing's patients. Some people can't deal with illness, as it reminds them of their own mortality, and Cushing's adds a level of frustration not often seen. It can take a lot of work to put friendship ahead of fear and frustration.

I've known Mary for more than seven years now. Her Cushing's was full blown by the time we met, and I've lived through almost all of her medical problems, except the broken hip that never healed and resulted in a total hip replacement at age 30. She and I "clicked," and we became close friends. So what did I do to help her? Basically, Mary talked, and I listened, as the "healthiest unhealthy" person I know went through the most difficult period of time I have ever seen. I listened during the hyperactivity, the sleepless nights, the excessive spending, the overwhelming work stress, and the stubborn weight that refused to move, despite rigorous diet and exercise. I shared in the frustration when no medical tests revealed why she didn't heal, or couldn't sleep more than two or three hours a night, or explained any of the other symptoms. I listened during the skin graft from a simple cut, and I was there for the lung embolism and the stress fracture that broke her leg. I listened as doctors were unable to diagnose Cushing's, and who thought her condition was something she could control.

And I listened, as Mary told me about Cushing's. I've listened as Mary has gone through the hard times after diagnosis. Pituitary surgery, radiation, finding out the tumor wouldn't die easily, the broken arm, the decision to have her adrenal glands removed, a serious post-op infection that put her back in the hospital, awful medication side effects, the struggle to manually regulate her cortisone levels, pronounced mood swings and the sheer frustration of being unable to clearly see the end of the journey. I've also listened to her fights with her health insurance carrier, and we've both been tempted to physical violence by incompetent labs that lose or mess up tests. But I've also listened as the weight seemed to melt off, as the hyperactivity disappeared, and as sleep took eight, or more, hours. I've listened as everyday there seem to be new treatments discovered and new advances made in understanding Cushing's. So what else did I do?

I also listened and I talked when Mary DIDN'T want to talk about Cushing's. There were days when she, or I, or both of us wanted to forget about this mysterious, maddening, nerve wracking condition for a while. Cushing's is a 24 hr a day condition, but that doesn't mean your interest in anything else, or your ability to talk about non-Cushing's matters atrophies. Being able to carry on long conversations where words like "Cushing's," "doctors," or "the lab lost my 24 hr test again," never appeared, kept us from burning out on talking about Cushing's. We needed to step back from Cushing's and talk about something else, like my tendency towards irrational obsessions, our shared interests in gardening and crocheting, or any topic in the world we tend to wander to. By not always focusing on Cushing's, we are able to handle the times when we needed to.

While I listened, I also sympathized and supported. I let her take the lead when we talked of Cushing's. I didn't pass judgement. I believed what she told me and never believed that it was "all in her head." I didn't minimize the suffering or frustration that Mary was going through. I saved my frustration with this disease and what it was doing to my friend, for the incompetent labs, arrogant doctors and short-sighted HMOs.

I also think that we learned together. We quickly learned that Cushing's is so unknown, that every week the doctors are uncovering something new, so what she tells me one week, may be reversed the next week, and off in another direction the third! That's one thing that has been so difficult about this - just when we expect clear sailing, Mary has an unexpected reaction to a new medication, a new treatment doesn't do what it is supposed to do, OR tests come back with confusing results. At first, we thought Mary was just an unusual Cushing's patient, but since her involvement with CSRF, and from attending the conferences, we found out that unusual is normal! We quickly learned to be prepared for unusual side effects and unanticipated symptoms. I think we both supported each other, as both Mary and I were always so hopeful that the next step would be the solution. With friends, it sometimes happens that one is upbeat when the other is down, and this balancing act has kept our friendship strong.

While sometimes I did advise, I never demanded, and I recognized that I could do little else, but listen. I couldn't fight this battle for her. It was HER body the tumor grew in. It was HER body that suffered under the overproduction of cortisol for 10 years before it was diagnosed. SHE was the one suffering from the side effects of the medication, and would be the one to suffer during the manual regulation of her cortisone levels. I couldn't demand that Mary follow this doctor's advice, or attempt this treatment from that doctor. I wasn't the one who would have to live with the results.

So how have I survived? Cushing's hurts me as well. Make no mistake. I never, ever, EVER, forget that this is Mary's "show." But because I care for Mary, I've been affected by how she's been affected during the course of this disease. It hurts when she would tell me about what side effects the different medications would have, and she would have to decide each week whether she wanted to be nauseous, sleepy, starving, or have her bones hurt so much she cried. It's painful when one of the smartest people I know talks about days when her short term memory is gone and her reasoning skills have flown out the window. It's hard when your best friend talks about having brain surgery or her adrenal glands removed. It's difficult to deal with when she explains her emergency cortisol, and how to use the syringe and medication. It's tough when she talks about severe moods swings that have no purpose, except that they are the result of Cushing's. It is confusing trying to sort out one test or medication from another. I want to help, but there isn't much I can do regarding her treatment, except maybe strangling the incompetent lab technicians that mess up or lose the 24 hr tests! While parts of this have been difficult for me, this experience has made me appreciate Mary's strength, and my own, and that's a wonderful addition to our friendship.

We did find a way for me to help - even when I felt I couldn't. I listened, I supported, I believed, I didn't judge, and I cared enough to stay close. I picked up the phone when Mary didn't.

Anna Maurer

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February, 1999

Living Well With Health Challenges

by Gayle Heiss

THE ISSUES AND FEARS OF ILLNESS
Part of being alive is accepting that things are changing all the time. Being fully alive requires responding flexibly and creatively to the changes. Life's struggles usually come from reacting rigidly and trying to keep things exactly the same. Some of the changes are given a name -"illness" or "disease." When long-standing or chronic, we are faced with one of the greatest challenges to our ability to accept change. The threat of physical vulnerability dramatically brings up two issues we all must deal with at some time in our lives: facing who we are when it is not possible to continue in our familiar roles and our own mortality.

Facing illness, regardless of whether it is chronic or temporary in nature, means finding a way to live one's life so that our life is meaningful to us and to others in spite of the changes. Facing illness also means confronting fears of the unknown and discovering the inner strength to cope with all the "what ifs."

The source of that inner strength comes ultimately from maintaining perspective, especially after tangling with all the worst fears - leaving one with the grateful feeling that whatever I can do has deep meaning and joy. That sense of appreciation is always there to draw upon, no matter what. Another name for it is faith.

When an illness touches us personally, we feel our own vulnerability as we discover the error in our assumption that things always happen to someone else. Within families and in other close relationships, people often make an unspoken and unconscious agreement with each other to guard against exposing their vulnerability. An illness insists that our common vulnerability be recognized. The integrity of the relationship then requires that the original agreement be replaced by a new one that promises mutual acceptance of each other's susceptibilities as well as strengths.

Another change that comes with an illness is that the heart opens in a way it perhaps has never opened before to other people's pain, especially when associated with an illness. This rich connection with others increases even further that perspective that leads one to be so thankful for all there is rather than grieve over what isn't, used to be, or might have been. Ironically, there wells up a feeling of being more, rather than less, fortunate than those who are in good health, but whose hearts are closed and perspective narrow.

RESPONSES TO ILLNESS
Coping with illness clusters around four kinds of responses. These responses are more likely to fluctuate and even be simultaneous than to follow any sequential or timely progression.

1. Give up, experiencing only loss - of certain particulars in life as well as of an enthusiasm for life in general.

2. Make a statement to the world by continuing on with all the same activities and meeting the same standards as before. Act as if nothing has changed, in spite of the added strain that means for the body at a time when it needs extra care.

3. Create a full-time job of curing all physical symptoms, investigating all that traditional and alternative healing methods have to offer, even if it means leaving little time and energy for other things - like focusing on the possible positive aspects that might grow out of a redirection in life or using the increased awareness and sensitivity to develop creative options for leading a full, rich life that doesn't depend on a particular kind of body.

4. Accept the challenge of the present physical limitations and learn from the lessons it offers about attachment, letting go, control, and vulnerability. They are lessons we all face all the time; they are just more poignant when they come disguised as an illness. In that frame of mind, set priorities. Find the balance, being open to all the possible ways to heal the body as well as to all the present joys and yet undiscovered ways of living a meaningful life should some of the physical symptoms remain, in spite of the best efforts. This last response is what "healing" means in its fullest sense: healing the wound left by the loss of the invulnerable body as well as healing the disease or symptoms. We do have control over the first kind of healing; the second is sometimes less of a certainty or can be a long time in coming.

RESPONSES FROM OTHER PEOPLE
Making the necessary changes required because of illness - giving up familiar roles, reordering priorities, or generally changing patterns - is often as difficult, if not more difficult, for those around someone with an illness as it is for that person.

Frequently others need their loved ones, friends, or co-workers to quickly heal their bodies so they can go back to being exactly as they were before. Exploring new avenues allows a person with an illness to adapt to the circumstances. Others may find confusing and disturbing the adjustments that requires in their relationships with those individuals.

People can imply that not continuing on with usual activities is giving in to the illness, focusing too much on the body: "Perhaps a more positive attitude would help." They do not realize that a positive attitude comes from discovering those things that are appropriate now, not from clinging to past pursuits, no matter how difficult and frustrating the effort. Perhaps having no idea what an on-going illness feels like, they overestimate what "sheer will" can accomplish. Those who have the energy of a healthy person don't have to reorder priorities as one does who experiences the indescribable fatigue that accompanies illness, nor do they live with the uncertainties that an on-going illness brings - never being able to count on feeling well enough to easily do what has been planned.

It can create an added strain to find a loving way to respond to seemingly endless suggestions from people who may understand very little about the particular disease process occurring. Few people stop to think that theirs might be just one of the many suggestions offered that day, all of them loving, well-intentioned, and often convinced that theirs is the one right method. Indeed, one would have to be in perfect health to be able to undertake the healing program others have in mind.

Others also seem to get a little nervous if your path (as mine happens to be) is following your intuition, listening to the still small voice within. For it requires structuring some solitude, having discipline, and taking the responsibility for creating in your own environment and on a day-to-day basis the elements of a healing retreat (including a healthy diet, daily exercise, and your own personal spiritual practices). There are no outward signs of a program and no teacher, except ourselves.

There are many people, places and programs that can provide support and can help give us the strength to make the necessary changes, but we are the ones who ultimately are responsible for those changes. No one else can do it for us. No one else can crawl inside us; we know better than anyone else what we are feeling and therefore can judge best what is helpful.

When faced with a physical illness, the most effective therapist is the body, an ever-present provider of immediate feedback more powerful than words, reminding us that only by accepting things as they are will we come to see life as the gift that it is rather than as a struggle.

Connections between people soften the feelings of isolation and discouragement that can erode the will. The willingness to reach out and accept generous offers of help allows people to show their love and concern, just as we would want to do for a friend of ours in a similar situation. Indeed, finding increasing ways to support each other is our most meaningful role in life and on in which everyone can participate.

FIRST STEPS TOWARD HEALING
The challenge in designing a healing program is to find a balance, remembering that the goal is to restore a healthy outlook (which requires acceptance, then creative change) as well as a healthy body. Be open to anything that might improve or cure the physical symptoms; at the same time, be selective. Since there is precious little time in life (true for all of us), why make the sense of self and satisfaction in life contingent on getting the body back to its previous state. Welcome the perhaps long-overdue task of examining whether present life style and day-to-day priorities are congruent with personal values and rhythms.

For example, I always loved my work and continued to love the idea of doing that work, but refused to acknowledge that it was no longer a positive experience because physical limitations were getting in the way. I simply didn't feel well enough, enough of the time, to do it with ease or to meet my own standards. It left me feeling defeated and too drained to do anything else I enjoy.

When I could no longer continue, I gave up my job and entered what seems to be a necessary "transitional" stage, where previous roles and, to some extent, sources of self-esteem are not yet replaced by new ones.

THE TRANSITIONAL STAGE
Changes are not linear; we rarely can go directly from A to B. This is the time to just "be" - adjusting activities and pace according to the body's requirements rather than to other people's agendas or expectations. It's the time to explore which of the usual activities are still comfortable or to consider what adjustments might be made to continue some, if not all of them. It's the time to make a priority of doing things that are nurturing and absorbing, that leave one feeling focused, whole, and productive. Perhaps these are on-going pursuits that may have been put aside, especially since health problems began. It might mean replacing past interests with new ones that are more appropriate now. There are so many ways to enjoy life without making the body an enemy.

Living in that transitional stage requires faith, but I found it also provided me with the opportunity to return to those things that have always been sources of my faith - gardening and music. By being totally able to lose myself in the process of caring for plants or making music, I wind up with the perspective that my own personal drama is just part of the natural rhythms of something much larger.

In the garden I recognized that I am rather like a plant that has been pruned. Now dormant, the plant looks bare and empty; but energy is circulating in new buds that will emerge with fuller and more balanced growth. And who knows in what directions it will branch out?

At the piano I appreciated that just as the plant needs to be pruned, one note has to be released before one can fully experience the sound of the next. Holding down the previous key while subsequent notes are played can create a beautiful harmony, but there are times when clarity is necessary; the pure sound of each progressive tone is a reminder that each small step one takes has its own reward.

Each of us can find our own path to building our source of inner strength; knowledge that is useful for a lifetime, illness or not.

A TIME FOR REASSESSMENT
Becoming better acquainted with the vitality of the person inside is what ultimately releases us from some long-standing, automatic, and unexamined attitudes and expectations. Self-imposed or externally-imposed, we come to accept certain criteria as positive and then judge ourselves according to our fit with the mold we've chosen. Some of the "growing pains" of an illness come from the effort it takes to extract ourselves from that mold. But, the rewards for the effort are an extended sense of self and increased flexibility, a more solid self-image that is less reliant on external standards.

People often perceive and judge themselves and others as "healthy" or "sick." When first presented with a diagnosis, we find the news startling: "I've always been so healthy!" But by definition, every person is physically healthy until she/he develops symptoms or an illness. This awareness can act as a buffer to those feelings of defeat and inferiority that arrive with the symptoms and chip away at self-esteem. We are each an individual with a fully developed life and rich personal history before we get an illness. A diagnosis cannot change any of us suddenly into a different person.

One of the major frustrations that accompanies an illness is that the ability to be efficient and adhere to busy schedules is compromised. One can't move as quickly or sustain energy for as long. The familiar "second wind" now may be replaced by a less dependable "second breeze."

However, efficiency and schedules are only tools, means to an end. Sadly, in our culture they have become ends in themselves and can interfere with the quality of life, with our ability to connect with the moment, with a sense of inner peace.

Appreciating this fact makes it easier to feel comfortable about taking a slower pace and longer transition times. In the early stages of my own illness, I expressed my frustration with the statement, "I feel like a Type-A personality trapped in a Type-B body" - seeing my slow-moving body as the obstacle. After some time had passed, my attitudes and habits changed: "Perhaps I've been a Type-B body trapped in a Type-A personality." Now my mind, with its strict agenda, appeared as the culprit.

An uncluttered mind that can embrace the pure and simple is, in fact, opening to the grace that many of us seek in places so remote from ourselves. Savoring the moment doesn't mean indulging in only short-term pleasures at the expense of long-term commitments or enduring values. It means focusing our attention on where we are now.

A PANORAMIC PERSPECTIVE
There is an invisible thread that weaves together the lives of all of us, regardless of physical condition, age, or life style. We share a common desire to touch that nameless source that gives our lives meaning. When we find ourselves in a crisis, it tests our courage and will to engage creatively with the unknown. We are asked to greet the challenges of life with the same intensity as we greet our passions. In the process, we discover the strength of our convictions - our integrity - and hopefully emerge declaring, "In spite of everything, I wouldn't trade my life for anyone else's, no matter how perfect the body living it."

ABOUT THIS ARTICLE: Gayle Heiss has been leading weekly support groups for those with illnesses or physical problems and their families and friends since 1988. Gayle's perspective also stems from her personal experience with Sjogren's syndrome, an autoimmune connective tissue disease. The material in this article is condensed from Gayle's booklet entitled "Living Well With Chronic Illness" (copyright 1988). An expansion of this material can be found in her book which can be ordered through your local bookstore or directly from the publisher:
Finding the Way Home: A Compassionate Approach to Illness
QED Press, 800- 773-7782, ISBN 0-936609-35-4 , 1997 $24.95

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November, 1999

Quality of Life Following Treatment for Cushing's Disease

by Julie Gumowski, RN, BSN
Nurse Specialist
NIAID
National Institutes of Health

As an endocrine nurse who took care of all phases of Cushing's disease/syndrome patients, from confirming their Cushing's diagnosis through treatment options, I have often wondered about their life at home years after they were treated for their Cushing's disease (CD). What symptoms most influenced their life when they had Cushing's? Did their symptoms decrease after treatment? How were they currently doing? Was there any information they needed about post CD treatment expectations? To help answer these and other questions, I applied for and received a nursing grant from the Endocrine Nurses Society (ENS) to study quality of life (QOL) and CD. The following is an excerpt from my presentation at the ENS meetings held in June 1999 in San Diego, California. More specific information and data will follow in a future scientific publication. Special thanks to my collaborators, Dr. Tonja R. Nansel, NICHD, and Dr. Lynnette K. Nieman, NICHD, on this study.

While many of the symptoms of CD adversely affect QOL, few studies formally evaluate this aspect of the disease and its improvement after surgical cure. Transsphenoidal resection of ACTH-secreting tumors induces remission of CD in most patients. We hypothesized that QOL would be diminished in active CD and would improve after treatment as CD symptoms resolve. Health-related quality of life for our study is defined by one's functional status, as well as physical and mental well-being. Current professional or lay literature does not address QOL and whether it improves after treatment for CD.

We developed a QOL questionnaire using a modification of the SF-36 tool. The SF-36 tool is the gold standard for QOL as it is a validated and reliable tool. It is a comprehensive, short form with only 36 questions. This tool measures health status and outcomes from the patient's point of view The SF-36 health survey measures 8 health concepts, which are relevant across age, disease, and treatment groups.

These health concepts include limitations in physical activities, limitations in usual role activities because of physical problems, bodily pain, general health, vitality (energy and fatigue), limitations in social activities because of emotional problems, limitations in usual role activities because of emotional problems, and mental health. Eight health scores as well as summary physical and mental health measures are compiled from the survey and can then be compared to both the normal as well as certain disease populations.

We mailed a post-treatment follow-up survey to 415 patients who were treated at NIH for CD from 1982 to 1991. It was self-administered and included demographics; recurrence of Cushing's questions; treatment outcome questions; CD symptom checklist prior to treatment and now; and the SF-36 survey with added questions. Our CD patients were from all over the world as well as from all across the United States. So as to not jeopardize future publication of specific results, I will summarize some of our findings briefly here. I will refer you to read the data when it is published in an upcoming journal. In general, slightly more than one-half of the patients thought they were currently cured and that their current QOL was "pretty good or very good". Before treatment, patients reported a mean of 21.9 symptoms whereas after treatment, patients reported a mean of 8.4 symptoms. Weight gain and fatigue were the most common symptoms both before and after treatment. Facial hair and weight gain were the most bothersome symptoms both before and after treatment as well. Patients also reported unclear thinking and an inability to work as bothersome symptoms. We compared our treated CD patients as a group with patients who have high blood pressure, diabetes, and congestive heart failure and to a few current Cushing's patients with active disease. In regards to physical functioning and physical summary scores, the treated CD patients in general do better than the congestive heart failure patients but not as well as the general population. Our CD population compared favorably to all groups in the mental summary scores.

As a nurse, I am very interested in learning what information CD patients would have liked to have known prior to treatment. Many of the patients shared their thoughts with us. Length and preparation of recovery time, inability to lose weight, and post-operative pain were the most common themes. Therefore, more patient education on what to expect could be expanded in both our pre-operative and post-operative teaching.

Since there is so little published information regarding the patients' perspective and CD, we need to be aware of their point of view in helping them cope with their CD. I thank all of the patients who participated in our study. More research work needs to be done in the future. As one patient wrote, "The quality of life does not instantly return once your cortisol level returns to normal. It takes work to get there. Please explore that in your study."

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April, 2000

Coping: Psychologist and Cushing's Patient:

by Dr. Jennifer Kirkland

I thought it was just stress. I was in graduate school getting my Ph. D. in clinical psychology and helping others deal with the emotional aspects of life. In my mind, going to school full-time, holding down two jobs, working on a dissertation and trying to maintain a social life were just hard to juggle. Living off of 5 hours sleep a night seemed normal. When other things started creeping up, I still thought it was stress. Based on my training, I tried to manage it that way. I'd like to share with you what I found useful during this experience, but first, the rest of my story since I think that telling your story can be part of the healing process.

Early on, the most disturbing symptom was the moonface. I even called it that. I went on vacation for a week and didn't exercise. I gained five pounds - all in my face and neck. When I returned, I found I couldn't get back into running and lifting weights. When I ran, my heart rate went up to 180 and stayed there for hours. Then my hair went frizzy. All of the sudden, I started feeling like disaster was just around the corner. All of the time.

Since I had chosen this life, this profession, I just kept going. I tried to cope by using a number of techniques that I usually suggested to patients. I enacted the healthiest lifestyle possible. I ate my vegetables, drank water, walked instead of ran, cut out caffeine, sugar, chocolate and alcohol. Mega doses of protein drinks slowed down that panicked feeling in the morning. When I started having overwhelming menopausal symptoms at age 30, I dabbled in herbal remedies. Black kohosh and Valerian root helped keep me from going into face flushes and sweats by day. But at night, every night, I'd awaken at 4:30 AM like I'd been struck by lightning. I only went to one doctor that first year. Being a student, I had no health insurance, so my parents took me to doctor friend of theirs who told me I should diet more and realize I wasn't getting any younger.

During year two, I did my dissertation and completed my pre-doctoral training. By then, I realized I had to work on myself spiritually if I was going to get through it. I studied more about stress management and practiced the techniques faithfully. I learned to live in the moment and clear my head of the 50 things that ran through it constantly. I focused on the moment, practiced deep breathing and prayed when I felt the sky was about to fall.

My self-esteem started getting lower and lower. It didn't matter how hard I worked. I saw more and more things I had to do. I became a neat freak, and had to get up an hour earlier to clean before I left the house. It went beyond perfectionism. But I always looked in the mirror and cried when I saw that moon face staring back at me.

Year three began the descent into the worst year of my life. I started my postdoctoral training at a well-known HMO hospital working as a neuropsychologist, someone who specializes in working with brain injury patients. My supervisor and I were the only neuropsychologists for a region of three million insurance members. I was working 50-60 hours a week and getting paid for 40 (at $10/hr). I also worked weekends to make ends meet. Soon I found myself using many memory crutches, just like my patients. By that time, I was so strung out, I had no ability to remember anything. I kept a small notebook with me and jotted down everything - things to do, people's names, phone numbers, conversations. My voicemail was always jam-packed and luckily, the receptionist kept track of my appointments. I triple checked all of my documentation before I put it in people's charts.

Since I also got health insurance, I went on a quest to figure out what was going wrong with me. It wasn't until I was ready to file a stress claim against the hospital that they found it. I showed a nurse-practitioner the before and after pictures of me as a testimony to how much my job had taken its toll. She said- "that's not your job - that's Cushing's !" I ran back to my office, got on the internet and researched and checked out every endocrinology text the hospital had. For a week, I, the doctor of the brain, dealt with the possibility of having a brain tumor!

Luckily, being "Dr. Kirkland" allowed me to pull some strings. I got access to my lab results before my endocrinologist did. I kept working at the hospital so I could get the information first. I still remember my boss' shock as he caught me putting my pee jug back into my ice chest at work. Thanks to the HMO environment, it took two months of testing to confirm a left adrenal gland tumor. My cortisol levels started out at 442 and rose to 716 before the end. By that time I succumbed and quit trying to cope so much. I started gaining and gaining weight. Every afternoon I'd get the stomach popping out and throbbing. I gained a total of 22 pounds despite the struggle to diet and exercise.

I also knew I was getting crazy. I'd fight impulses to buy things and drive to faraway places. When I returned from work, I'd put away my car keys and only walk places. I once walked 4 miles one way to rent a video. I talked on the phone with friends and tried to make sense of it.

My mother was there for the surgery, as well as my friends. My boyfriend had long since gone. They were all well-meaning, but no one was prepared for the aftermath. I withdrew from everyone. My endo actually suggested I go cold turkey from hydrocortisone two weeks post-surgery. Stupid me tried it and ended up in the emergency room, half dead, five days later. If a friend hadn't dropped by when I started throwing up, I could have died.

It felt like all the colors of the rainbow went away. I worked 20 hours a week to keep my health insurance, but spent most of my time lying on the couch, in a stupor with my cat lying with me. I spoke to no one. I was a shell of my former self. What got me going was the threat of not passing my licensure exams. I had six weeks to study and it helped me focus and retrain my brain to function without all the cortisol. I think I did so well, not because of the studying, but because I didn't have enough cortisol to eat, much less to get nervous.

I weaned myself off of the hydrocortisone at seven months, but didn't get a clean bill of health until nine months. Even then, I didn't feel "normal", but I could feel myself able to feel again. Now, almost two years later, I'm still learning what normal is. I've been at the extremes of arousal, now it's time to manage everything in between. Physically, I have loss of bone mass and still haven't made it back to the gym. I still have that first 5 pound weight gain, but at least I'm back into my clothes.

Sometimes I wish I had the energy that I had with Cushing's. But now, I have a choice about things. I'm still celebrating that I don't HAVE to clean my house. Consequently, I choose to be a lousy housekeeper these days. I love being able to sleep. I don't keep a notebook anymore - not because I don't forget, but I don't care so much if I do. The world won't crumble if I'm not perfect..

And by the way, rainbows are once again in full-spectrum color.

Editor's note: Dr. Kirkland is a practicing psychologist in the San Francisco Bay Area. You can reach her by email at jbkmail@yahoo.com

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What I Found Helpful and Why

From my story, I hope all of you can see that even a trained psychologist cannot control the stress of Cushing's. I knew about all the techniques, used them, but still I was not normal. While none of the techniques solved my Cushing's, I do think some were helpful in seeing me through Cushing's and recovery.

1. Enact the healthiest lifestyle possible. You don't have control over the Cushing's but having a healthy lifestyle may help you feel that you are doing the best you can.

2. Work on yourself spiritually. Self esteem is difficult to maintain during Cushing's. Realize that as a human being, you are much more than what you can do or how much you weigh.

3. Try relaxation exercises, deep breathing, and focusing on the moment. These may calm you down and help clear your mind by focusing on a specific thing, such as your breathing, or getting your muscles to relax. Focusing on a detailed mental image of something you find pleasing, such as the shape of each individual petal in a flower, its color and its smell, can also be calming.

4. Keep a notebook for memory. Write down things that you feel are important to remember, but recognize that even normal people don't remember everything.

5. Check your accuracy on items that require memory, but understand that you don't have to be a perfectionist.

6. Don't try to cover up memory problems or worry about them to an extreme. Covering up and trying to appear normal consumes a lot of energy and in most cases is not necessary.

7. Try to control strange urges if you really feel you should. Avoidance or removing temptation can be useful. This includes putting away your car keys if you feel you must drive to strange places, or not going to a shopping mall if you cannot control your spending.

8. Withdrawing from others is a typical sign of depression, but can also be associated with just not feeling well or being able to do the things that your friends and family can do. Try to keep in touch with family or friends who are sensitive to your situation. Withdrawing completely leaves one without a support network. Use the CSRF networking list, as speaking with another person who has Cushing's can be helpful.

9. Retrain your brain during and after your recovery. Once the Cushing's is resolved, your memory and ability to concentrate should improve. Part of memory is concentration. You can practice concentration by reading and actually studying. For example, pick an article that you find interesting, spend some time pulling out the important points that you want to remember, and maybe write them down. You will more than likely find your abilities in this area to improve.

10. Discover what your "normal" is. Through the Cushing's, you've probably been hyper due to all the cortisol and during recovery, you are drained because of low levels or withdrawal effects. These are the extremes of arousal. Recognize that it will take some time to discover what your physiological normal really is.

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Winter, 2002

Coping: Cushing's and Children

By Lorrie Ines

The unrelenting struggle of Cushing's is an enormous challenge to face. Daily lives become filled with tests, appointments, fatigue, pain, waiting, etc… The stakes of coping with these challenges become even higher when children are involved. How do we help them cope with the complexities of living with a parent that is ill?

As parents, we are meant to be the caretakers of our children, but what happens when illness occurs and impedes our ability to perform these tasks? In speaking with other Cushing's patients, I found that this issue is a shared concern among us.

Included here are a few quotes from others tackling this problem. Laura states, "I feel like my children are neglected, like I don't given them enough attention/interaction. Most times I am so exhausted that I can't give more." Another mom, Shelly states, "They know that Mom can't do as much as she used to, or be able to stay awake long enough after dinner to even help with their homework, most of the time. I wish I could do more with them, but I just don't have the energy."

Children can react to a parent's illness and limitations in a variety of ways. As Susan, a mother of four, points out with regard to her children, "There are times when they are so compliant and do anything I ask them to. Sometimes they lash out in anger towards me. They are angry that I can't do things with them that other mothers do with their children. They have fear and insecurity. They fear I am going to die and they will have no one to care for them." Other children may cope with their stress through avoidance or somatic complaints.

Jayne, the mother of a 2-½ year old daughter describes how she handles the difficult times. " I always explain things. When I have panic attacks or crying spells, I explain that I am tired, like she gets at naptime and bed time. We talk about Mommy needing to stop for a minute."

Experts say that open, clear communication is the key to aiding children in coping with a parent's illness. We would like to extend a special thanks to The Brain Tumor Society for sharing the following article by Carrie Tredwell, M.A., with us.

Editor's note: The quotes used in this article were generously provided by fellow Cushing's patients/survivors via Cushings-Help.com.

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Children Coping With a Parent's Illness

By Carrie Tredwell

Coping is a highly individual process. What works for one person will not inevitably work for others, and what might get you through one circumstance may not get you through another. We subconsciously and consciously collect information to analyze a situation and select a coping style. Not only do we analyze the current situation requiring us to cope, but we also search our memories of past events to try to understand how to manage each new situation.

What happens when we are not given all of the information that we need to understand a situation? What happens when we do not have any experience that allows us to predict an outcome? Unfortunately, this is the situation our children may face when a parent is sick. Adults may attempt to protect children from stressful situations by masking the truth or pretending that nothing has happened. Children are extremely perceptive and insightful, and they will sense that something is wrong. If children are not told the truth, they will use their creative minds to conjure a seemingly appropriate explanation.

When explaining a parent's illness to a child, use simple, age-appropriate language, giving examples by drawing on emotions and feelings that the child knows. It is important to be honest, and allow plenty of time for questions. When some time has passed, have another talk to make sure that your child truly understood the conversation, as well as to respond to new questions and concerns. Sometimes children do not know the words to appropriately express their feelings. Parents can tune into their children's nonverbal expressions of coping. Temper tantrums, crying, withdrawal, and physical aggression are all nonverbal expressions that children may use to cope with their emotions. Plan activities, such as drawing, playacting, etc., with your child to give him or her an outlet for these feelings.

A change in routine sometimes adds to feelings associated with lost control. Many persons, and especially young children, are much happier when they know what to expect or when they have a "set routine," because it allows them to mentally and physically prepare for a situation. Parents have little control over doctor appointments and treatment effects. However, they can try to keep children's daily routines as consistent as possible. For example, if six-year-old Maria has gone to baseball practice every Tuesday afternoon, but now her mother cannot drive her because it conflicts with treatment appointments, a friend can drive Maria to practice. If Sunday dinners are always at Grandma's then try to uphold that tradition. Not only will you preserve a sense of routine, but you will also provide them with important sources of support. Parents can also develop new routines for their changing lifestyle.

Talk to your child about the different people that they will see in the hospital (nurses, doctors, patients, visitors), what they wear and about their jobs. A number of children's books give parents appropriate words to explain hospitals and doctors to their child, as well as medical play kits that introduce children to medical tools used by doctors and nurses. Call the hospital to ask if a Child Life Specialist is available to give your child a tour of the hospital (there may even be a playroom).

Communicate with your children, allow them to express their feelings, prepare them as well as you can for new situations. Afford them the luxury of routine; allot time to be with them. Above all, take the time to care for yourself so that you have the strength and patience to care for your child.

Editor's Note: Ms. Carrie Tredwell, MA works as the grants manager for The Brain Tumor Society and holds a Master's Degree in Child Development.

EXPERIENCES OF LIVING WITH A RARE DISORDER-

Why Suffer Emotionally More Than Necessary?
By Mark Flapan, PhD

Although your disease is a condition of the body, it affects the human spirit as well. If you live with aches, pains, stiffness and fatigue; if you're physically limited in what you can do; if your appearance has changed; and if, in addition, you fear for your life - your thoughts and feelings about yourself and others are inevitably affected. Distressful thoughts and feelings about yourself and others can undermine your life as much as, or even more than your illness. It's bad enough to have to put up with all the physical ailments of your illness: why should you have to put up with more emotional distress than necessary?

Even though you may not be able to do anything more about many of your physical ailments, you can do something about your emotional distress. This is so, because your distress is brought on by how you think about yourself and your illness, and you can change how you think.

In this article, I'll describe ways of thinking that lead to emotional distress and then I'll suggest ways of thinking that can help you live a less stressful life, even with your illness.

You Blame Yourself
Medical research may not, as yet, have found the cause of your disease. If that's the case, you're living with an ailment that seems to have come from nowhere - that has no rhyme or reason for being. But you need to make some sense out of it. There has to be some reason why you got it. It's hard to live with the unanswerable question, "Why me?"
Blaming yourself for your illness may be your way of answering the question.

You're most likely to blame yourself for your illness if, as a child, your were blamed when things went wrong or when something bad happened. But you may blame yourself even without this background.

You may believe your poor health habits or your "nerves" caused your illness or that you brought it on by something you did that you shouldn't have done. Or maybe your family blames you for something you did and you think they may be right.

You may believe the stress in your life was the cause. It's certainly a popular notion shared with many in the mental health profession that upsetting emotions bring on diseases of all kinds. And there was plenty emotional stress in your life before your illness.

Whether what you did or the stress in your life was the cause of your illness can only be determined by future research. And even if stress, or something you did, is eventually found to be related in some way to your disease-which it may not

be-does it make sense, in the absence of research evidence, to blame yourself? If you think about it, maybe its better to live with the discomfort of the unknown, than with the pain of self-blame. It would certainly be less upsetting.
If you think in more religious terms, you may explain your illness as God's punishment for bad behavior. You know, you didn't lead a "pure" life according to your religion, and maybe that's why you were inflicted with an illness.

If your illness was God's punishment for bad behavior, everybody would have some disease of other, since no one's life is beyond reproach. Be that as it may, it's unlikely that your sins were that much worse than all the well and healthy people walking around without any kind of physical ailment as punishment.

You may not, in fact, think that you did anything wrong or bad enough to deserve your affliction. After all, you were and are a good person. In that case, you may blame God for letting this happen to you, or you may have lost faith in God when you need him most. I realize that religions in the past have taught that disease is God's punishment for sinful behavior. If you're troubled by this thought, or if your faith in God has faltered, I suggest that you talk to a pastoral counselor of your religion, or read Rabbi Harold Kushner's book, When Bad Things Happen to Good People.

You Feel Sorry for Yourself and Envious of Others
Since getting ill, you may feel that an awful thing has happened to you that shouldn't have happened. You may feel singled out and treated unfairly in life. You're most likely to feel this way when you compare yourself with your healthy family members and friends who lead normal lives and who are able to do things you can no longer do. You can't help feeling envious that their lives are going on as usual, while
yours may be in shambles.

Of course, with or without a chronic illness, if you compare yourself with others, you can always find someone better off to agonize about, just as you can always find someone worse off. But when it comes to a disease, there's no rule book that says who should or shouldn't get one; just as there are no rules indicating it's fair or unfair if one person gets a disease rather than another.

In any particular instance, a disease is a chance event, like the hand you're dealt when you play a game of cards. An illness was one of the cards you were dealt in the "game of life." And in the game of life, as in a game of cards, you can decide to live or play to the best of your ability with the cards in your hand, or you can decide to make yourself miserable by focusing on the awful hand you were dealt.

Put differently, you can decide to live as fully as possible, within the limitations of your illness, or you can decide to lament what has happened to you instead. But in either case, keep in mind that while you don't have a choice whether or not to have an illness, you do have a choice as to how to think about and how to live with it.

You Feel Guilty
If, because of your physical condition, you're unable to do all you think you should be able to do, you may feel guilty for being ill. This is most likely to be the case if you're unable to fulfill your responsibilities to your family.

If you're a man, you may feel guilty if you can no longer earn a living, fix things around the house, or function sexually as you used to. If you're a woman, you may feel guilty if you can no longer keep your house or do things for your husband as you once did. And if you have young children you can't take care of, your guilt may be unbearable.

Worst of all, however, is not to be able to take care of yourself - to need help in such personal matters as dressing, bathing and toileting. You may not only feel guilty for being a burden on whoever helps, but you may feel embarrassed and humiliated besides. Not only that, you can't imagine how anyone can take care of you in this way and not come to resent you.

Feeling guilty comes from the notion that you're doing something bad or wrong when you don't meet your self expectations or when you don't meet the expectations of others. But in being sick and in being physically limited by your illness, you're not doing anything bad or wrong. When it comes to an illness, there is a difference between doing something and being something.

An illness, like aging, is something that happens to you, not something you do. You're no more responsible for the disabilities due to your illness than you would be or are responsible for disabilities due to aging. In neither case does incapacity mean you did something bad or wrong.

But maybe you feel you're taking advantage of your illness by not doing things you're still able to do. Maybe you ask for more help than you need and you feel guilty about this. If this is so, you have to decide whether you want to limit your life by using your illness in this way and then feeling guilty, or whether you want to live as fully and independently as possible within the actual limitations of your illness and with less guilt.

You may also feel guilty about the changes in your family brought on by your illness. If this is the case, keep in mind it's only by chance that the disease is in your body rather than in the body of some other family member. After all, it could have been your husband or one of your children who got the disease, instead of you. But no matter which member of a family happens to get a chronic illness, an illness is a family affair, and the whole family is inevitably affected. Like it or not, each family member has to accommodate to the illness in the family one way or another.
Not only that, if your partner or one of your children had a chronic illness that required your care, would you want them to feel guilty for the accommodations you would have to make? Would you want them to feel guilty for being a burden on you? You know you wouldn't.

While you're not responsible for the physical limitations brought on by your illness, over which you have no control, you are responsible for the guilt you feel related to your illness over which you do have control. This is so because guilt comes from your belief that you're doing something wrong in being physically limited by your illness. And as I've suggested, there are more realistic ways to think about yourself and your illness that would allow you to live without punishing yourself with guilt. Self-punishment is what you add to your illness, it's not part of your illness.

You Feel Ashamed
If you view having a disease as a weakness, a defect, or a failing on your part, you may feel ashamed of being ill. This may especially be the case if you need to see yourself as self-sufficient and as a person who can take care of yourself no matter what, and now you have to depend on others to take care of you.

However, no one is, in fact, self-sufficient. Self-sufficiency is a self-illusion. We all need each other, one way or another. Of course it's true, that with a disabling condition you need others in more ways than you would otherwise. But what you get from others physically, can, in part, be balanced by what you give emotionally. And what you're able to give emotionally doesn't have to be limited by your illness.

You may also feel self-conscious and ashamed if your disease has symptoms that show - if your disease has affected how you walk, how you talk, or how you look. You may feel self-conscious and ashamed of any physical symptoms that set you apart from others, like uncontrollable bodily movements or a deformity of any kind. These visible signs of your ailment that announce to the world that something is wrong, may make you feel like a freak.

Your appearance is important to you not only because you have an image in your mind's eye of how you're supposed to look, but because you feel the attention and affection you get from others is due in large part to how you look. This is especially so if your disease has altered your facial appearance in some way.

For anyone whose face has been changed by illness, it's important to keep in mind that even though your disease may affect the look of your face, it doesn't have to affect the look on your face. The look on your face is, in part, an expression of how you feel about yourself and others.

If you devalue yourself because your illness shows, or if you assume that only your appearance matters to those around you, you'll relate differently to others. And relating differently, more than looking differently is what mostly affects the response you get from others.

It's not that people don't react to your appearance but they respond primarily to the inner person reflected in your behavior and expression. A person may attract others by his or her looks, but is not loved for looks. So even if the look of your face has changed, it's your feelings for others reflected in the look on your face that will bring you the love and friendship you desire.

When all is said and done - it's up to you. To have a chronic illness and live without blame, selfpity, envy, guilt or shame you have to come to terms with the fact that physically you're not the same person you used to be. Yes, for a period of time, you'll be tearful and sad over the loss of an identity you took for granted - an identity of a physically healthy and able-bodied person. But, if after grieving this loss, you can say, as did Popeye the Sailor Man, "I am what I am and that's all I am" - you'll no longer suffer as much emotionally because of your illness.

While the "symptoms of your body" are caused by your disease, which is not under your control, the "symptoms of your spirit" are brought on by your outlook, which is under your control. After all, it's your beliefs, your self-expectations, your ways of thinking about your self as a person with an illness that lead to your emotional distress.
Changing your thinking is up to you. I hope you take up the challenge of developing ways of thinking that help you live with your illness with the least possible emotional distress.

Notes
1. This series of articles relate primarily to the emotional effects of disease that emerge during adulthood rather than conditions present from birth.
2. Of course, a man or a woman can feel guilty for being unable to fulfill whatever family responsibilities he or she has assumed whether or not they are traditional for husband or wife.

Dr. Mark Flapan had Scleroderma and was the founder of the Sclerodoma Federation. He was a psychologist with special interest in the emotional effects of chronic illness, both on the ill person and on family members. He passed away in the late 1990's.

This article is reprinted with permission from the Orphan Disease Update published by NORD, and is part of a three part series.

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Coping: How to Have Fun With a Pituitary Tumor
By: Dori Middleman, MD

In November 2001, I was diagnosed with Cushing's Disease due to a pituitary tumor. I realized that humor could help me cope with my terror over having a major illness, and I hope my account of the fun I made of my illness will be helpful to others.

How to Have Fun With a Pituitary Tumor

A Pituitary Party with a pituitary-shaped cake, complete with tumor of a different-colored icing, a pituitary hunt for the kids, a raffle to benefit the Wellness Community (a cancer support group), and a contest for the most creative object to be inserted inside my head in place of the removed tumor were ways in which I distracted myself from the terror of surgery. I hired a story-teller, who wrote pituitary stories. I bought the game, "Cranium", to give as prizes for the winner of the replacement-object contest, and my caterer created pituitary-theme foods: pituitary pasta, cerebral cucumbers, and had a cauliflower simulating a brain decorating the table along with a scarecrow who displayed the sign, "If I only had a brain…"

My pituitary party invitation read:

As you may or may not know, I have been diagnosed with a pituitary adenoma, a small tumor close to the brain, and am having surgery on April 3rd, 2002. I have decided that one thing you can do for me is help me have fun with my tumor. Traditionally, tumors have been viewed as undesirable, somewhat dreaded, and even potentially life-threatening. They've gotten a bum rap, in my opinion. I think they give life a purpose (survival with a few brains intact) and give their bearers something to talk about, but better yet, laugh about.

Dan Gottlieb, a Philadelphia Inquirer columnist, in his April Fool's column on the importance of not taking oneself too seriously, gave me and my party a notable mention, resulting in all of Philadelphia knowing about my surgery and many expressions of support and concern.

Indeed, contemplating death and disease is not the way I most enjoy spending my time, although I did a fair amount of that too. But throughout my illness and recovery, I have attempted to make the most of the cards I have been dealt.

Other health-promoting strategies I have used included:

• regular mass e-mailings to my close friends to keep them apprised of how I was doing so they could best offer support;
• contacting everyone I could think of for recommendations and information on doctors
• finding and conversing with fellow patients for people with my illness, Cushing's Disease
• using hypnosis, yoga, exercise, acupuncture, massage, Gestalt, and energy-work as adjuncts to my medical treatment
• re-entering and using psychotherapy to support me emotionally through the process of illness and the stresses of medical treatment (In Gestalt therapy, I spoke to my tumor and my pituitary and came to understand their function in my life: I had a hypomanic pituitary mimicking my own sometimes hyper-functioning mode of living.)
• joking with people as much as possible about tumors to facilitate comfort of myself and people providing my care from hospital registration personnel to my neurosurgeon
• carrying with me at all times the small objects people offered to me as tissue replacement
• wearing a donut-like pendant covered by a symbol of a healer as a reminder of my pituitary with a hole in the middle healing

Unfortunately, my surgery was unsuccessful, and I faced a decision between a second surgery or radiation treatment. I did not find this funny. In fact, I was pretty demoralized and said so in an email to friends and colleagues, again inviting humor. One of my colleagues placed a request to the entire international mailing list of my Gestalt therapy colleagues on my behalf, saying she had "an ill friend in need of humor". In came jokes from around the world - about fifty pages of them - which I read to my driver en-route to my gamma knife radiation treatment in another state. We laughed our way there and back!

Life is what it is. We get what we get. And we might as well enjoy it!

Editor's Note: Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children, Jeremy, 7, and Aria, 5. Dr. Middleman can be reached by email at DrDori@AOL.COM.

Editor's Note: Humor is receiving increased interest in the medical community. The September 20003 issue of Reader's Digest has an article on humor and health, including a list of funny movies! The article reports that Dr. Berk (Loma Linda Univ.) found that blood tests indicate a decrease in stress hormones even with anticipation of a humorous event.