Ten Steps to Recovery From Chronic Illness
Those faced with chronic illness have a variety of pressures to deal with beyond the illness itself. CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) is a good model to use as an example. These people first have to struggle with terrible suffering in the absence of a diagnosis. If their first contact with healthcare is with a conventional medical doctor, chances are high that they will be told that they are “just depressed.” As their lives fall apart, their physical exhaustion proceeds to near-AIDS levels and they begin to lose their memory and concentration. They know that something more than depression is going on. They go from one healthcare practitioner to another until they finally get diagnosed.
Sometimes the diagnosis won't be entirely correct. For example, they may be told they have CFS/ME when, in fact, they have Lyme Disease, which is quite overlooked, especially on the West Coast. But at least they have a name and a handle. They finally know what they are dealing with.
About one third of people with CFS/ME will fully recover over the course of several years, with or without treatment. The rest struggle with questions like:
1. Has my doctor diagnosed me accurately?
2. Does my doctor really know what he's doing?
3. How long will treatment take?
These questions are the focus of this article, but rather than focus on “how long treatment will take,” we will focus on the stages of recovery. Knowing what the stages are provides a kind of roadmap that assists one with the ups and downs one goes through on the way to recovery.
In examining the stages of recovery, I thought it would be worthwhile to look at two other staging models. The first is Elizabeth Kubler-Ross' stages of death and dying. My assumption was that the stages of recovery might incorporate some of Kubler-Ross' stages, but in reverse order. I was largely correct in that assumption. Secondly, I have looked at the 12 steps of AA to see if those steps match the steps for recovery from physical illness. They don't.
The 12 steps primarily deal with issues of admitting powerlessness over a particular problem (usually an addiction), identifying and strengthening one's connection to a Higher Power, surrendering the problem to that Higher Power, and endeavoring to improve one's moral character. With regard to recovering from a chronic physical illness, identifying areas of psycho-spiritual weakness and improving them, and then connecting more deeply with a Higher Power will bring greater peace of mind in dealing with that illness. Those steps will also create a state of mind in which physical healing is more likely to occur. Beyond that, it would be a mistake to use AA's 12 steps as a template for creating the 10 steps for recovering from physical illness.
We'll start by looking at Kubler-Ross' 5 stages of death and dying:
1. Denial and Isolation: “No. Not me. It can't be true.”
2. Anger: “Why me?”
3. Bargaining: “Yes, me, but God, what if I change….”
4. Depression: “Yes, me.”
5. Acceptance: “Yes, me, and it's okay.”
These 5 stages are useful in the reverse order, as we'll soon see. But before looking at the steps, it is important to know that psychological strategies for dealing with acute versus chronic illness are different. Former President Bill Clinton just had quadruple cardiac bypass surgery. The most useful pre-op strategy is denial, not what psychologists would have suspected fifty years ago. The outcome is better if someone in Clinton 's situation says, “It's a bit scary, but I'll be fine. Nothing to worry about.” After surgery, the same strategy applies. “I'm great. I'll be back on my feet in no time at all.” However, a few months after bypass surgery, it is time to move into a more conscious awareness of all the factors that led up to advanced cardiovascular disease, take a personal inventory, and change one's attitudes, diet, exercise program, and belief system.
Believers and Non-Believers
Before looking at the 10 steps of recovery from chronic illness, we need to acknowledge two basic groups of people and how they approach treatment. There are believers and non-believers. Believers are those who, when they first sense that a treatment approach is true and right, will quickly and easily commit to that approach, and will fill in the missing pieces of data later. Non-believers are those who are initially skeptical, waiting for proof before they believe. Their approach to a doctor and his approach is, “Show me the proof or results first, and then I'll believe.” Neither group is better than the other, but it's important for patient and doctor to understand which of the two they are dealing with.
My sense, without scientific, double-blind data, is that believers tend to recover more quickly and actually appreciate the whole recovery process more than do non-believers. In the long run I cannot say that, one year after treatment, most of those who have fully recovered will be in the “believer” group. Many of those who started treatment with great skepticism have reached complete recovery.
The non-believer needs to be respected and given as many facts as possible, along with the re-assurance that the doctor values all of their doubts and questions. It is easier initially for a doctor to treat the “believer,” but he has to be careful to fill in all the missing pieces that the believer may not ask, because his or her faith is so high. Even if the believer doesn't really need to know the details, is showing good improvement, and trusts the doctor and his treatment modality, sustained recovery will be facilitated if the doctor knows that he should still fill in the missing pieces, explain, in-depth, what each lab test means, explain where that person is in the recovery process, and what to expect next. I have respect for both approaches to life and illness.
Here are the 10 steps for recovery from chronic illness that I have developed. This system makes room for both believers and non-believers. Some steps require no more explanation than the name of the step:
The 10 Steps
1. Hope, doubt, and healthy skepticism about trusting a new physician.
2. Anger about the unfairness of the illness, the number of doctors seen, the money spent, and the fear that the current doctor's approach might just lead to one more failure. If the clinician explores the anger, he will find that the patient is often angry with God. The anger is similar to Kubler-Ross' 2 nd step: Anger. “Why me?” The person who has been sick with CFS/ME for 5, 10, or 20 years usually feels, “Why me, God?”
3. Denial. After I explain in detail how I work, what lab tests I use, and the usual progression of treatment and recovery, some will respond, “Doc, I'm going to be the one who responds to treatment in seven days.” These people, the believers, may have premature acceptance of everything I say or suggest. The fact is that, like with bypass surgery, many of those with this kind of denial do recover very quickly. However, those who don't can really plunge into despair if it turns out that they are slow responders. Denial is Kubler-Ross' 1 st step.
4. Anxiety and Depression while waiting for treatment to kick in. After starting treatment and waiting for the first glimpse of improvement, a person may start asking herself, “Will it work for me? Does the doctor really know what he's doing? Did I make a mistake in taking this direction?” Anxiety rules here. Then memories of past treatment failures resurface, memories of feeling misunderstood by doctors, of promises made that did not pan out, and of money spent in vain. In step 4, the person with chronic illness will swing between anxiety and depression.
5. Minimizing Sign of Improvement. “It can't be true. I feel better, but it probably won't last, so I won't pay attention to having had three great days in the past week, even though my last good day was ten years ago.” At this phase, patients will reluctantly tell me about any positive changes. I have to work hard and ask a lot of questions. Their improvement may be expressed this way at the very end of a session. “Oh, by the way, I did have 3 days last week in which I felt totally normal.” People are almost superstitious, afraid that the mere mention of progress will jinx them.
These responses are similar to Kubler-Ross' 3 rd step, “Bargaining,” except the bargaining is in the reverse direction. The recovering patient can't quite believe that the improvement is real and, in a sense, they are bargaining against recovery. It is as if they are saying, “Yes, I had a few good days, but I don't trust that it will last. I won't even admit that there are positive changes.” The patient is bargaining with Self and God about the reality of the positive changes. The individual with CFS/ME has had to cope for years with terrible pain and suffering, with hopes that were crushed over and over again. She has developed a coping style and a set of beliefs to protect herself from more disappointment. To protect against being set up for another fall, she bargains . . . to keep her old belief systems intact. She tells God, “No, I'm not any better. Don't try to convince me because it can't be true.”
6. Tentative Acceptance. The patient has experienced a couple of months of distinctly better health. At first they may not have believed that positive changes would be sustained, but now they've been feeling better for so long that they are beginning to accept the fact that they “might actually be recovering.”
7. The Plateau. After several months of excellent recovery, the person with CFS/ME may totally forget how bad they felt before treatment and may say, “I'm discouraged. I don't think anything is going on at all.” What has happened is that they have plateaued. They have established a new baseline of health that is much better than how they felt before they started treatment. Once you plateau, your new normal is just “normal.” In these cases, I open up the patient's chart and begin reviewing the initial symptoms that person had when we first met.
In one case, a patient with CFS/ME had the usual 50 to 60 symptoms common to that illness, and upon review, only 7 symptoms remained. In order to deal with “temporary amnesia” of the Plateau, I ask my patients to journal, making entries every day about their symptoms, about anything unusual or new in their health (mental or physical) and to write down any questions they have for me. Some people simply won't journal, which makes my job more difficult and our consultations less efficient and productive. For those who journal, we have a daily record of the ups and downs, and the general progression toward recovery. I know where they started, how they have been progressing, and exactly how they are now. It is helpful for people to re-read their journal every few months. With rare exceptions it is a story with more ups than downs.
8. Permanent Acceptance. The patient deeply believes in the treatment modality and the doctor. In addition, there is a deepening faith of a Presence, a Higher Power or God, that guides healing.
I begin working with spiritual issues as soon as I can, sometimes during the first session. “Permanent Acceptance” is akin to “improving our conscious contact with God” and occurs when healing is pronounced and continuous. This is equivalent to Kubler-Ross' last step, “Acceptance,” of one's impending death. In this case, the patient begins to accept their impending recovery.
9. Relapse. Fear, doubt, depression, and anger surface as health temporarily declines. Relapse is to be expected with CFS/ME. Sometimes relapsing can go on for years, but sometimes the patient is completely healed in six months. When a patient relapses, she thinks, “Not again! It's not working. Something is wrong with me. Maybe my doctor is an idiot. God, what is wrong with me?”
You might wonder how one could go from Total Acceptance into Relapse, which includes fear and doubt. It is not unlike an alcoholic who has been sober for two years, has worked through all 12 steps, and then relapses. All of her work has not been in vain. You relapse. You start over. In the case of CFS/ME, when you relapse, you are not back at the bottom or the beginning. It only feels that way because you can lose all perspective during a CFS crash. If treatment is working, the individual has a new metabolic foundation in place and her relapses will be shorter and shorter in duration.
10. Healing Into the Moment. There is a re-definition of what “healing” means. Healing may not mean total mental and physical recovery from the illness. Perhaps the person has recovered 50 percent or 80 percent, and they don't seem to be improving anymore. What is required for complete healing is complete acceptance of what is. The individual stops fighting and struggling “against” and is better able to observe negative mental and physical states as the “witness” of those states, rather than experiencing oneself as the same as those states. When one comes to the level of healing into the moment, one identifies less with the physical body, whether it feels good or bad. Instead of raging at a bad day, people can develop more neutrality and say to themselves, “Oh, how interesting. It seems the muscles are more fatigued today and the brain isn't quite as sharp.” By healing into the moment, one becomes whole and everything is “okay.” Even though “healing into the moment is the 10 th step,” it would serve one well to move into this attitude at the very beginning of the healing journey and not at the end, but it has been my experience that this shift in consciousness occurs later on in the treatment process.
Recovery, when looked at with total acceptance, includes setbacks. Few are going to be super-stars of physical recovery, Lance Armstrongs. The individual looks at him or herself with love and forgiveness. In early stages, people will beat themselves up more than would their worst enemy, blaming the illness on some kind of personal character flaw, or on a failure to give the program 100 percent. Whatever your best is . . . is really what your best is. If you can do better, make adjustments, but then let go into the healing process. Regret, and a lack of forgiveness and love for oneself will slow down ultimate physical recovery and will definitely impede one's spiritual evolution.
Making the Most of the Roadmap
The 10 steps I have outlined will vary from person to person. For some, one or two steps may not apply, or they may move through them so quickly that they become irrelevant. For the vast majority of you recovering from chronic illness, it is quite helpful to be able to use these 10 steps as a roadmap, so that you can know where you are on your healing journey. Like using any other map, when you actually start the journey, you may find detours. You may find that the 10-step sequence slightly varies for you.
Most people who suffer from chronic illnesses work without a map at all, trying one approach after another, one doctor after another. They move from hope to fear and doubt, cycling through the same emotions. By the time they have reached me, that cycle of emotions is a downward spiral. The fear and doubt are worse and I frequently hear, “Doc, you are truly my very last hope.” I'm glad that they have that hope, but the attitude is incorrect. I know that they are likely to go through these 10 steps with me. Sometimes they will love me and sometimes they won't, but eventually they will reach step 10 and will proceed with greater inner peace on their healing journey.
Dennis Gersten, M.D. practices nutritional medicine and psychiatry out of his Encinitas office and can be reached at 760-633-3063. Please feel free to sign up for Dr. G's Health Digest newsletter at www.aminoacidpower.com and access 1,000 on-line pages about holistic health, amino acids and nutritional therapy.
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This may sound like a simple question and not worth answering, but this problem affects me every day. I'm a guy, and I'm losing my hair. I'm wondering if your books and ideas of positive thinking can help in any way. Thanks for your time.
D.M., Boulder, Colorado
Simple questions are all worth answering! More than 30 million men and 20 million women have thinning or falling hair. This column doesn't have the space to totally address this issue; however, there's a book I highly recommend: Healthy Healing by Dr. Linda Rector Page. It's available in almost every health-food store, and is now in its 12th expanded, updated edition. This book addresses the many factors, both internal and external, that are involved in hair loss and which can lead to improved thickness and regrowth.
A key component to hair loss is circulation. I ask you now to relax your scalp. If your scalp is relaxed, then it's certain that you're tightening your scalp through stress. You can consciously relax your scalp 20 to 30 times a day. You can massage it. You can do hourly deep breathing exercises. All this will definitely allow the hairs on your head to have more room to grow.
Do get the book (at www.healthyhealing.com). It has so much more in it, and addresses hundreds of physical ailments.
Affirm: I love my hair, and I now do everything I can to allow it to be healthy, rich, and full.
I've been experiencing anxiety attacks. What should I do to avoid this awful feeling? I've also been very depressed, and I've lost faith.
G.G., Puerto Rico
Anxiety attacks come from feeling helpless about emotional and physical stresses encountered in daily life. Lack of B vitamins can stress the nerves; even drugs like Prozac put us at risk for panic attacks. Going through the day holding our breath can also contribute to these feelings. Your thinking is so mixed up that you're frightening yourself.
You need to sit down and take several deep breaths and be aware that Life loves you. Say to yourself: All is well. Out of this situation only good will come, and I am safe. Repeat this to yourself over and over. Keep breathing. Go for a walk. Exercise is good for reducing panic. Breathe deeply as you walk, and find as many things as you can to appreciate and be grateful for. It sounds simple, but simple things work the best.
Make sure you eat well—that means no junk food. Magnesium would be good to take for your nerves. You will come out of this. You will turn your life around for the better. I know you can do it!
If I'm working on my abundance, what answer should I give to my children when they constantly ask for things they want me to buy them (candies, toys, activities, etc. )? I'm tired of answering, “ I don't have money right now.” I know that this isn't a positive thing for me to say.
P.M., New Mexico
Children will always ask for as much as they can. It's up to you to set the boundaries. No child gets everything they ask for! You don't mention how old the children are. Do they get allowances? If so, then they can also learn about budgets. Don't feel guilty about saying a simple “No.” Things you can also say are: “It's not in the budget right now.” “The candy fund is empty at the moment.” “Whining doesn't work.” “Let's enjoy the things we do have.”
Learn to work on abundance together. You can all say affirmations to increase prosperity: My income is constantly increasing. I prosper wherever I turn. I am a money magnet. Money comes from expected and unexpected sources. I bless my money with love. I am comfortable with what I have now. I am grateful for everything in my life. Life loves me and takes care of me.
Please send letters to: Dear Louise Column, c/o Hay House, Inc., P.O. Box 5100, Carlsbad, CA 92018-5100, or to: admin @hayhouse.com . Visit Louise's www.LouiseHay.com or the Hay House Website at: www.hayhouse.com.
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