Chapter 1 Disease
1. What is chronic disease?
Your doctor explains you have a chronic disease. Your first question is probably, “What is it?” The word chronic comes from the Greek Chronos for time. It is so named because those diseases and conditions listed as chronic last a long time, at present most of them for a lifetime. Whether you have Lupus or Asthma, Heart Disease or Chronic Fatigue Syndrome, you are in it for the long haul. That is not to say you will always feel sick, or never be cured. Chronic conditions rise and fall in intensity, much like waves on a lake. You may have long spells of only mild symptoms, or go into remission and feel like your disease has disappeared. Then you discover it is still lurking, and a variety of triggers can cause a relapse. As yet, there are no significant cures for most of the chronic diseases, but rather treatments that help to minimize the symptoms. Great strides are being made in this area and in future, many of the chronic diseases might be eliminated or prevented.
2. What causes chronic disease?
Your second question is probably, “What caused it?” You want an explanation in order to understand and in order to believe. Your doctor’s answer will be the first of many steps down the path of frustration, because it will be, “We don’t know”. There are many theories formulated to explain the cause of chronic diseases. Scientists are talking microbes and virus, bacteria and flukes. Many of the diseases overlap or are linked by many of the same symptoms. None of the theories around causes have been fully proven to date, although new information is being proven accurate at a faster rate.
The invisible diseases I focus on in this book (excepting heart disease and diabetes) are called autoimmune diseases. They result from a breakdown in the immune system. The actual process is metaphorically a war happening inside your body. Scouting cells called macrophages wander the body searching for any foreign protein. When they find an enemy soldier, called an antigen (anything from dirt under your skin to a cancer cell) the macrophages transfer the problem to an officer or helper T cell. The T cells find and stimulate white blood cells or send out troops. They, in turn, make antibodies to bind around the antigen or take the prisoner(s) captive. In this way the antibodies impair the antigen while at the same time labeling them for attack by specialized larger cells – so the skirmishes now become battles. If they perceive that the enemy is not being destroyed, they send in more troops to destroy the antigen at increasing rates. Whatever is recognized as a properly functioning part of the body is permitted to remain (the friendlies), all else is attacked. When the situation escalates to this level often the troops get confused. They can no longer see the difference between friendlies and enemies so they attack everything. Now good cells are being destroyed (innocent victims of war). If you have a genetic weakness this is quite often the area that comes under attack.
You want to know, “How can my body turn on itself?” It recognizes itself by reading the molecular pattern on the surface of the cell called the major histocompatibility complex (MHC). If the MHC is valid the cell is left alone. But when there is a huge build-up of antibodies trying to fight antigens they actually transport protein from the invader to the healthy cells – thereby providing them with false ID. The healthy cells, falsely imprinted, then become priority targets for the killer cells of the immune system. For example in the case of Crohns and Colitis the antibodies believe that the mucous secreted by the intestinal tract is the antigen and attack it.
3. What triggers chronic disease?
Generally this internal war is possible because your immune system is already weakened by other factors. The two factors that most interfere with the normal operation of your immune system are:
a) Sleep Deprivation
Many North Americans are suffering from this condition. The segment of the population highest hit is “Mompreneurs” entrepreneurial moms who are trying to do it all. They are now classified as double shift workers. According to the National Sleep Foundation of America it is necessary for the human body, regardless of age, to have eight hours of sleep per night to function properly and replace dead cells.
The results of a 2013 poll by the International Sleep Foundation showed that 53% of Canadians and 56% of Americans are getting less sleep than needed. While Canadians said they functioned best with 7 hrs 22 min minimum of sleep per night, they were only averaging 7 hrs 3 min. Americans were averaging only 6 hrs 31 min. Dr Allan Pack, medical director of the National Sleep Foundation, blames the frantic pace of modern society, saying, “The pressure to work often superseded sleep as a priority.”
When you’re overloaded, sleep is the first thing you sacrifice in order to meet other demands. And many working people now move from work-related activity to bed, resulting in delayed sleep syndrome, which in turn causes sleep deprivation and inhibits the ability to deal with stress. Researchers at the National Sleep Foundation of America found that women are 50% more prone to sleep interruption than are men. The fact that biological functions like menstruation, menopause and pregnancy cause sleep disruptions increases the odds that working women are sleep deprived. At present women are succumbing to the autoimmune diseases at a rate three to nine times higher than men, depending on the disease.
But children too are being diagnosed with chronic disease in growing numbers and at an increasing rate. Blended families and working parents mean many children no longer benefit by routine. The structure of set naptimes and bedtimes allows the necessary rest to rebuild their cells. Their days are extended by long commutes to schools or long hours in daycare waiting to be picked up by working parents.
“I’ll push myself until I’m so sick my body breaks down and I can say I’m sick. That’s the only way I get a break.” Shelley
As more working women fall by the wayside, their spouses are being ask to take on the domestic, and prime child caring responsibilities the women are forced to relinquish in order to deal with severe health issues. Over time these men will also succumb to sleep deprivation. As a growing number of “single dads” take over childcare, a new class of “Dadpreneurs” creates the potential for more sufferers of chronic disease.
Chronic sleep deprivation leads in turn to the inability to deal well with stress. If you are overtired you may find yourself blowing things out of proportion, or reacting instead of remaining calm and taking a proactive stance. The smallest obstacle can appear like a mountain too high to overcome because you are viewing it through the lens of exhaustion. You may get caught in a downward spiral where lack of sleep increases the amount of stress you experience and the increased stress contributes to your lack of sleep. At this point, you are in what I call The Chronic Stress Spiral.
For five years I counseled patients waiting for surgery for Crohns disease. Over and over I heard stories similar to this.
“My marriage has been just terrible for years. I kept trying to fix it. There was so much conflict. I was a mess, totally stressed out. Then my husband left me. I had two small children to support on my own. I didn’t think things could get any worse until I realized I wasn’t feeling well. Now I’ve been diagnosed with Crohns and they say I have to have surgery.”
Your story might be about the lingering death of a spouse, the need to re-locate an aging parent, trouble with a teenager, an unresolved conflict at work or dealing with a sick child. You could be locked into a situation you are refusing to resolve, or fighting a battle that can’t be won. You may have long term esteem problems or desperately want a child. But there is always a pattern to chronic disease. Stress accumulates to become chronic stress, trauma occurs, and a diagnosis of a chronic condition follows soon after. Don’t kid yourself. You’re in The Chronic Stress Spiral. It works like this:
You move into the stress spiral as a child. The first curve comes when Mom asks you to make your bed or watch your younger sister. You start school and responsibility grows – to get there on time, to do well for parental approval. School leads to social pressures from your peers around dress, and behavior, and conflict around personalities, attachments and competition. You might also have parents who are not available or incapable of teaching coping strategies and decision making. The number and types of sources of stress continue to increase as you head for higher education. You spin faster in the spiral. Already dealing with external and internal stresses, you are forced to make life decisions around career, work ethics, commitment etc. You may choose to marry and have family and the stress grows with each child you add. The ability to cope with stress is unique to each person. Whether you start feeling it early in life or later, it is how you handle it that determines if it will weaken your immune system. Life is about change both long term and minute to minute. If you can’t adjust to the constant changes in your life they become stressors (anything that causes stress).
c) The big blowout
Somewhere in your body is a genetic flaw. It’s a given unless you’re perfect. Probably you have several genetic flaws. There is a paradox happening at this point – the amount of stress you are experiencing is making you less capable of coping with stress, and coping techniques are the only way to reduce your stress level. Think of yourself as a well-treaded tire just out of the factory, with an invisible manufacture’s flaw. You drive thousands of miles on pavement, gravel and mud. You stop and start millions of times and your tread wears thin. The tiny flaw is closer to the surface and more vulnerable to damage. Then BANG a nail pierces your worn spot. I call this trauma the BIG BLOWOUT. It usually results in disease.
4. Where am I in the Chronic Stress Spiral?
a) Assessing your coping skills
Here is an exercise I designed to help me in the early years of my disease. I still use it at the beginning of each year to assess how I am coping with stress.
Navigating Your Stress
Step # 1 List everything you do over a period of a month, under each of the following headings:
Family e.g. chauffeuring son to swimming
Work e.g. pitching new promo
Social e.g. entertaining spouse’s boss
Community e.g. canvassing for heart fund
Step #2 Assign a number between 1-5 (one being least and 5 most) for the level of stress each activity causes you.
e.g. Social Yoga class – 0 Parking for class – 4 Entertaining spouse’s co-workers – 5
Step #3 Beside each point you have written down, determine what action you can take to eliminate, or deal with that task.
e.g. Parking – take taxi or have someone drop off and pick up
Step #4 If you are unable to take an action (some things are beyond your control), then beside the stressor under each category write down what change of attitude will make the situation less stressful for you.
e.g. choosing to enjoy entertaining your spouse’s co-workers because you want to do it.
Step #5 Use this chart as a guideline to assess your stressor and make some big changes in your life. Follow the actions or attitudinal changes you wrote down. You will experience an immediate reduction in your stress levels.
When sleep deprivation and stress affect your body over a long period of time, the genetic weakness rises to the surface just like the flaw in the worn tire. It is at this point of the process the internal war I described at the beginning of this chapter heats up. If you consider your disease, or that of a person close to you, you can overlay this process onto your memory of what happened to you/he/she. First because your immune system is depleted you succumb to an illness. Your macrophages identify the virus, bacteria or whatever as an antigen and warn the T cells, who send white cells to destroy the antigen. The white cells can produce several different kinds of antibodies – each specialized for a different group of opponents. They also produce inflammation and a series of chemicals. The battle escalates and five of these chemicals attack the target cells and healthy cells on which they have transferred the false ID. They bore holes in the cell membranes and digest them. Your body starts to exhibit the symptoms of your particular autoimmune disease. You may experience inflammation, pain, ulceration, sweats, dizziness, diarrhea, stiffness, rashes, blurred vision, weakness in extremities, and the list goes on depending on the type of disease and severity of the condition.
I believe that the inability to cope with stress is the dominant trigger for chronic disease. I base this belief on my own experience of living with Crohns for 37 years and the evidence gathered in the process of researching and interviewing for this book. Science has proven when we are under stress you have reduced production of melatonin, which is a substance that helps fight disease, with proven anticancer effects. Adrenaline also plays an important role in lowering your immune system’s ability with its accompanying excretion of cortisol.
“There is strong evidence that a common denominator in many stress-related diseases is an elevated level of cortisol in the blood. Cortisol is another name for hydrocortisone, one of the corticosteroids secreted by the adrenal cortex. Chronically elevated Cortisol levels, resulting from unrelieved stress, may actually be the cause, or a cause, of chronic diseases. Cortisol is known to be a powerful immunosuppressant.It breaks down lymphoid tissues in the thymus and lymph nodes, reduces the level of T helper cells and increase T suppressors, and inhibits the production of natural killer cells. It also reduces virus-fighting interferon … a naturally occurring antiviral agent produced by the body as a first line of defense against invading viruses.” Michael A. Weiner, Ph.D
You cannot imagine the relief it brought me to read these words. For years I had been telling everyone on my support team that I believed I was allergic to my own adrenaline, because every time something happened in my life, good or bad, that flooded my body with adrenaline, two days later my Crohns would flare up. Now Dr. Weiner has explained to me that corticosteroids with all their negative effects are released into the body along with an adrenaline boost. If you are Type A, reactive, like I was then – I’ve come a long way since – you are experiencing adrenaline rushes constantly throughout your day. You might be thrilled because you landed a big account, have just managed to avoid an automobile accident, or scared by your son jumping out of the closet at you. The adrenaline floods your body and the cortisol is spread throughout your immune system. The effect is cumulative and over time the back door is cracked open for disease to enter.Another point Dr. Weiner makes of immense interest to me, and that I feel is important to pass on to you, is that organs like our spleen, appendix and tonsils are part of the lymphatic duct system a primary player in our immune system. When I was young it was the fad to remove tonsils if they became infected. Mine were taken out after several bouts of inflammation – ironically, that meant they were doing the job they were designed for and helping to battle an antigen in my body. When I had my first bowel resection they removed my appendix because it derived its blood supply from the calcum that had to be removed. Often the spleen is removed when damaged because as long as pneuovac is administered to control lung infection, the body can survive without it. Although I still retain my spleen, I hope (Iwas zipped open and shut so many times who knows what is left in there) I no longer have tonsils or appendix to play their important role of providing B and T cells and filtering out antigens trapped by the lymph system.
b) Attitudes to stress:
- Surrender – some people just give up when it becomes too much. Surrender can be both a physical and mental state. The person might have a mental breakdown, at which point they refuse to deal with anything, or their body might shut down on them, forcing hospitalization and surrender to other peoples’ remedies.
- Ignore – you have heard about the person whose troubles wash over them like water off a duck. You probably know someone who is able to ignore the things that are driving you up a wall. They just shrug and see it as one more of life’s little quirks. At the same time as you admire them they irritate the heck out of you. While you’re emoting and raising your blood pressure this person is getting on with her day. Oh don’t you wish you could follow her example?
- Resist – yet others resist stress with all their being, causing themselves a greater amount of stress and using up valuable energy in the bargain. Are you the type that fights the need to give in to anger, refuses to fire the lazy employee, or sweats over how awful the exam is going to be instead of studying? When you anticipate that something will cause you stress and then build on it, you resist to your own detriment.
- Use – some people actually claim to thrive on stress. I know my daughter always picked the Christmas Eve shifts at the Gift Wrap booth because she loved the pressure of impatient husbands lined up with their last minute shopping. (I learned to put my name on the volunteer list for the first week it opened.) These so called Brink masters love the adrenaline rush of extra pressure. If you create situations of pressure in your life, like meeting deadlines at the last minute or arriving just before the curtains go up, you may be addicted to adrenaline, and be building situations of stress so you get the rush. If you’re using stressors to stimulate you, realize that the effect of them is cumulative. What works for a year or two can build until your immune system is at risk and disease is imminent.
For approximately ten years from 1979 to 1989 my medical experts tried to tell me that the Crohns caused the stress instead of agreeing with me that the stress caused the Crohns. Science cannot prove that exposure to long term stress is the trigger of these diseases, only that it weakens the autoimmune system and makes us more susceptible to them. Many doctors do not recognize it as a causal factor and therefore do not treat the patient for stress, as a conservative, preventative precursor to drugs or surgery. However, most doctors do acknowledge its influence as a contributing factor, if not the catalyst. There is massive anecdotal evidence to indicate stress is an underlying cause of chronic disease.
It is therefore paramount that you take an immediate, active role in identifying and coping effectively with the stressors in your life.
- Make changes in your habits that will help you sleep better and longer. Sleep a minimum of 8 hours a night.
- Ask for help – ask your doctor for a diagnosis, your spouse or partner to take on more of the load, your children to cooperate, your boss for reduced hours and your co-workers for understanding.
- Complete the Navigating My Stress exercise on pages 4/5.
- Live by the results – take action or change your attitude to eliminate stress.
You know there is something wrong with you. You have been sensing it and experiencing symptoms for some time. You may be able to admit to both chronic sleep deprivation and stress. If you have not already asked a doctor to diagnose your condition, do so now. Diagnosis leads to understanding.
Watch for Chapter 2 Diagnosis next week.