Introduction

We are all affected by life changes throughout our lives. Some of these are relatively minor every day events while others are significant and will have a profound effect us. Some of these significant life changes may be positive (marriage, home purchase), while others may be negative (chronic illness, death). What may be a significant positive change for one person (changing homes, pregnancy) may be negative for another. And whether the change is positive or negative, there is usually a significant amount of stress involved. Further, if the life change is negative, such as with divorce, diagnosis of a chronic disease, death, etc., the individual who experiences it will likely feel a sense of loss. Any significant loss (not just through death) may initiate a grieving process, which may include depression along with a multitude of other emotions.

I have written this page of my Web site because the overall impact of a significant life change, such as the diagnosis of a chronic disease, will not only change us physically, but also mentally and emotionally. Although the changes may be invisible and are often ignored, they may have more far-reaching effects on the person's life than the actual life change itself. These effects may be related to the life change, but are actually caused by our perception of this event in our lives rather than the event itself. Learning to alter these negative perceptions and/or prevent them from occurring at all is an important aspect of maintaining optimum health while fighting a chronic disease.

The following discussion includes links to various appropriate material written by knowledgeable individuals or organizations. You may link to each item as you read down the page, or you may link to the three pages on this site that contain nine basic supplemental articles at the end of the discussion. The first page of articles contains a "Table of Contents" for your convenience. Links to articles at other sites must be made individually. I hope that reading this material will give you a better understanding of yourselves and a new perspective about coping with having sarcoidosis.

Take care and keep smiling.

Life Changes happen to all of us.

Change is a part of life. We may want things to remain the same, but they will change anyway. . . sometimes for the worse, sometimes for the better. I like to think that all things happen for a reason, although we may not understand right away that what has happened is in our best interests. In the words of Eleanor Roosevelt, "You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' You must do the thing that you think you cannot do."

A significant life change can be an event or occurrence, a loss or gain, positive or negative, but something that forever changes a person's life so they cannot go back to the way life was before the event. Many significant life changes can have both positive and negative effects at the same time (marriage, changing homes, divorce). Other events may be positive for one person and negative for another (pregnancy, menopause), so you cannot expect people to react similarly to the same event. And whether the significant life change is positive or negative, it will involve a certain amount of stress.

Some examples of significant life changes are marriage, divorce, ending of close personal relationship, death of close family member/friend/beloved pet, pregnancy, birth, diagnosis of medical condition that is debilitating or terminal, victim of violent crime, surgery, changing homes, moving to a new town/city/state/country, career change, change of financial status, and children leaving home.

Stress arises from both negative and positive changes.

Whether life changes are positive or negative, all of them will cause a certain amount of stress to the person who is experiencing them. Stress is the "wear and tear" experienced by one's body when it is subjected to a changing environment and attempts to adjust to those changes. Some forms of stress can be positive and energizing (eustress), while other forms are negative and can have harmful consequences if not properly managed (distress). There is no stress level that can be considered perfect for all individuals. Each of us reacts differently to different stressors including one person considering a stressor to be positive while the next person believes it to be negative. Even our age influences the stress level that is best for us.

Stress and illness have been found to be closely related. Many illnesses are triggered or aggravated by stress that is beyond the optimum level for your body. Thus, people with chronic illnesses need to reduce the stress levels in their lives and/or improve their ability to manage that stress. This can basically be done by either learning to reduce the stress via various relaxation methods or controlling what triggers stress in the first place.

Loss is a negative life change.

Any significant life change that is negative is considered to be a loss. We experience many losses during the course of daily living. Losses can take many different forms including the loss of: a close personal relationship, employment, body part such as a limb or breast/uterus, mental faculties, physical appearance/health, ability to see/hear/communicate, control over nature/life events, freedom, or the ultimate loss through death. It may even result from the feeling of loss when a person gives up many of his/her present/future life activities/plans to care for a loved one who is ill or disabled. It is well known that losses and changes can and do impact a person's life. . . forever.

There are many losses that are never forgotten, particularly if the loss involved a death. The hurt never truly goes away, but it will get smaller and be tucked away somewhere in the deepest part of your heart. It remains there as a constant dull ache, but can usually be overcome with time. More intense feelings of loss and grief may still resurface at times, just as painful and often without warning, making you feel that your are once again experiencing the loss.

A person starts recovering from the loss when the focus shifts. As you begin to truly heal from the loss, the grieving lessens to a point that you can perform daily functions, then eventually put the loss aside and begin anew. It also means that the person can progress to thinking beyond themselves to the needs of others. It means they are able to move beyond thinking only of the past and surviving today to thinking once again of the future.

Recovering does not mean forgetting. Recovering does not mean that the person will never grieve again. There still may be moments with a sense of loss and grief. The difference is that these grieving feelings no longer disrupt the person's life, or interfere with their capacity for growth, discovery and happiness.

Grief can arise from a significant loss.

Grief is a universal feeling that may express itself in many different ways. What constitutes a significant loss for a particular person and the reasons that people grieve are very individualized, yet in some fundamental ways very similar. The feelings of despair and wanting the ground to open up and swallow you are the common ones, the ones that people experience but rarely share. The depth of these emotions is difficult for someone who has never experienced a loss to comprehend, so it may be difficult for friends and family members to understand.

Dr. Karl Menninger: "Weeping is the most human and universal of all relief measures."

It can be very disturbing for someone who is grieving/depressed to be told, "Come on, get over it!" or "Cheer up, it could have been worse." or "If you have a more positive attitude about your life, you will be happy." These well-meaning people don't really understand what the grieving person is feeling, don't realize that the grief may be the result of more than one event, don't recognize that each individual will have a different grief threshold and a different reaction to the losses they suffer in life. They need to be aware of those differences and understand that each person is an individual with a unique set of emotions and responses to situations.

According to Elisabeth Kubler-Ross, author of On Death and Dying, "People in mourning have to come to grips with death before they can live again. Mourning can go on for years and years. It doesn't end after a year: that's a false fantasy. It usually ends when people realize that they can live again, that they can concentrate their energies on their lives as a whole, and not on their hurt, and guilt, and pain." Ms. Kubler-Ross identified five classic stages of grieving: denial, bargaining, anger, depression, and acceptance.

In 1998, Sister Teresa McIntier, who works with the American Academy of Bereavement, identified three phases of grief that occur after a loss: 1) Intellectual and Shock Phase, which includes a feeling of numbness, disbelief, and possible alienation from others. 2) Emotional and Suffering Phase, which is the longest phase and involves strong emotions such as anger, guilt, and fear along with sudden emotional outbursts. 3) Reconciliation and Recovery Phase, in which the person is able to begin reconciling his/her loss and rebuilding his/her life.

North Central Florida Hospice, Inc.: "Grief is not a problem to be solved, but a process to be experienced."

There is no exact length of time for a person's grief. A great deal depends on the type of loss, other factors that may have influenced the loss, what a person's coping mechanisms were before the loss, how many other losses the individual has endured, and whether or not any such losses have been dealt with in the past.

Chronic Illness/Chronic Pain is an ongoing Life Change.

Some significant life changes don't end. If the change involves a negative event such as the diagnosis of a chronic illness that involves intermittent/ongoing pain and other debilitating symptoms, the individual must accept and adjust to a whole new set of circumstances that could continue for the rest of his/her life. These changes could affect the quality of that life significantly. According to the Mayo Clinic in their article, Living with Chronic Illness, ". . .a chronic illness often begins gradually and may have several causes. Rarely is a chronic illness cured. Usually it persists for an indefinite time." Thus, the person faces certain challenges to happiness and productivity that other people are spared. Acceptance of such a situation must come before adjustment to a new lifestyle can begin.

Once the grieving process has been experienced and the person is ready to move on, an adjustment period commences. The adjustment period may be brief or lengthy depending upon the severity and longevity of the illness. In fact, the remainder of the person's life may require constant adjustments because of a constantly changing level of health. The chronically ill person tends to be more vulnerable than a healthy person, thus more often needs the support and understanding of family and friends. At times the person may also need a professional level of advice and support, too, and should not feel ashamed to ask for such help.

Moving on and re-discovering Happiness.

Life does change continually. . . and we should be thankful that it does so we can be aware that even in times of loss and grief, tomorrow will dawn with new hope. At some point circumstances and feelings will change, and we will be able to look forward once again. We will be able to move on, making adjustments where needed and living as full and happy a life as possible. We may even find we are better people for our challenges. We may no longer take time, things, and people for granted as we likely did in the past. And we live one day at a time, each to its fullest measure.