Invisible Illness Week (or National Invisible Chronic Illness Awareness Week if you’re not into the whole brevity thing) begins on Monday September 13th.

Created by Lisa Copen (who lives with rheumatoid arthritis and fibromyalgia)  it has been an annual  awareness event since 2002. Its purpose is to educate people on the wide-spread nature of chronic invisible illness. Believe it or not, those with chronic conditions make up half the population of North America. However, due to the invisible nature of these illnesses, most of us are simply unaware of the scope of this problem and the resources that are out there that can help.

Here is the theme for 2010:

Thousands of people around the world are participating by leaving encouraging sticky notes anywhere they think of, from bathroom mirrors and community bulletin boards, to inside of envelopes when they pay their bills. With nearly 1 in 2 people living with a chronic condition such as diabetes, arthritis, cancer, or fibromyalgia, about 96% of illnesses are invisible. The hope of the people involved at National Invisible Chronic Illness Awareness Week is to remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness.

As we lead up to the 13th, I would invite everyone  who hasn’t done so to download my free e-book – The Invisible Chain. It is a 19 page pdf that looks at the four realities that people with invisible illness must face in life. It also examines why our society finds it difficult to understand these illnesses.

Please feel free to distribute this e-book to anyone you think may benefit from it.

Click to open

National Invisible Chronic Illness Awareness Week is an annual event that features a free virtual conference online 9/13-17 with speakers each morning 10:30 – 12 USA Pacific time. There are a variety of ways a person can get involved including blogging for the cause, completing the Meme “30 Things You May Not Know About My Invisible Illness”, or joining the campaign on Facebook. Click on our sidebar link for more information.

Sick with Success has recently partnered with the National Asthma Patient Alliance (NAPA) and the Asthma Society of Canada to bring you valuable resources on dealing with this wide-spread chronic illness.

Our asthma page has links to several pdf documents which cover diagnosis, medication, asthma triggers and even a document for those with children suffering from the condition.

The page also includes several links to various asthma associations and societies in Canada and the United States.

I would like to thank Rob Lanteigne at NAPA for his help. You can join NAPA here. They also have a great blog.

If you are looking to donate money to a good cause, the Asthma Society of Canada would welcome your gift.

A long-term study done at  Stanford University indicates that interactions with a chronic illness coach can significantly increase the health of people with long-term illness. Stanford’s Chronic Disease Self-Management Program brought sufferers together with a facilitator who coached them through several aspects of dealing with chronic illness.

The coaching included techniques to deal with frustration, fatigue, pain and isolation. Communicating effectively was another core skill as were things like exercise and diet. Here is how Stanford summed up the results:

“Subjects who took the Program, when compared to those who did not, demonstrated significant improvements in exercise, cognitive symptom management, communication with physicians, self-reported general health, health distress, fatigue, disability, and social/role activities limitations. They also spent fewer days in the hospital, and there was also a trend toward fewer outpatients visits and hospitalizations. These data yield a cost to savings ratio of approximately 1:4. Many of these results persist for as long as three years.”

This type of self-management through coaching is so effective it has been endorsed by the Surgeon General of the United States.

Nurse Catherine Welch talked about the study with the  Sierra VistaHerald/Review. The following is taken from that article:

A long-term study at Stanford University revealed a need for a coping mechanism for those with chronic illness and their caregivers, said Welch. Stanford results showed that the participants had significant improvements in exercise, cognitive abilities and communication when a self-help program was offered.

“Anyone who has a chronic health condition — heart disease, arthritis, respiratory diseases, fibromyalgia, cancer or depression — suffers through the same things. Fatigue, pain, discomfort, stress …” added Welch. “They have to learn to live with it on a daily basis and learn to manage it.”

Sounds easier said than done, but the Stanford study indicated that through the use of coping skills, such patients become more active in self-management of their illnesses, which leads to a better life and considerable savings, she explained.

While surviving with chronic illness is difficult on its own, trying to thrive in a career at the same time can pose even more challenges.  It’s important to know that help is available.  For more  information on our chronic illness coaching you can check out our coaching section or fill out the confidential form below.

I spend a lot of time talking about the human cost of chronic illness, but I thought it might be worthwhile to look at some of the raw research done on the subject.

As you will see, there are some variations in the statistics – most likely due the way chronic illness is identified and the methodology of the study.  Despite the variance, the numbers are still staggering. We see that about half of all North Americans have a chronic illness. We also note that more than a third of the working-aged population is battling at least one chronic condition.

American Studies on Chronic Illness

57.3 million working aged Americans – 33 per cent of the working aged population – have at least one chronic condition.

Center for Studying Health System Change 2009

Chronic illness costs over a triliion dollars a year in lost productivity alone. That number is expected to reach $4 trillion in just over ten years

125 million Americans currently suffer with a chronic illness – and by the year 2020, that number is expected to rise to 157 million. To illustrate just how staggering that is, the numbers equal nearly one in two Americans who suffer from a chronic condition.

PBS series Who Cares: Chronic Illness In America,

Among the working-age population, 45 per cent have a chronic condition.

1998 Medical Expenditure Panel Survey

Depression is 15-20% higher for the chronically ill than for the average person
Rifkin, A. “Depression in Physically Ill Patients,” Postgraduate Medicine (9-92) 147-154.

Canadian Studies on Chronic Illness

A few of the numbers may seem slightly contradictory – but if you read carefully you’ll notice that some take into account productivity losses, some only medical expenses etc. It’s also worthwhile to note that many of the Canadian studies include only certain types of chronic illness (listed below) and omit others such as digestive diseases, some kidney and skin diseases. Therefore the total cost of all chronic illnesses are significantly higher than stated.

• More than half of Canadians live with a chronic disease.
• Chronic diseases are expensive: they cost the economy 77 billion dollars – almost half of the annual cost of illness in Canada.

Canadian Coalition for Public Health in the 21^st Century

• Worldwide, chronic diseases have overtaken infectious diseases as the leading cause of death and disability.
• In Ontario, chronic diseases account for 55% of direct and indirect health costs.

Ontario (Canada) Ministry of Health and Long-Term Care May 2007

Combining direct medical costs ($38.9 billion) and indirect productivity losses ($54.4 billion), the total economic burden of seven types of chronic illness (cardiovascular diseases, cancer, chronic respiratory ailments, diabetes, musculoskeletal disorders, diseases of the nervous system and sense organs, and mental illness), exceeds $93 billion a year.

(Note: These numbers to not take into account gastrointestinal, skin or kidney conditions . Therefore chronic illness costs to the Canadian economy are likely well over $100 billion a year)
The Chronic Disease Prevention Alliance of Canada 2004

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In the innate ability in all of us I spoke about Tim Gallwey’s book, The Inner Game of Work, which looked at the way we learn and develop.

Tim’s premise is that we have two parts, Self One, which we would roughly consider our ego or conscious mind, and Self Two which houses the innate learning ability we are born with. In many circumstances the key to learning is to minimize the interference of our analytic side and to enjoy, observe and be mindful of our task- allowing our innate learning side to operate.

If one continues on this course of thought, it becomes apparent that we must have trust in our innate natural self as well as a trust in fate (or trust in chance) in order to reach a state in which we are primed to learn and grow with the least amount of effort.

For those of us with analytic, focused and controlling personalities this is not a mental state which is easy to access. It requires a certain amount of practice in turning off the self-critical part of our brains.

However, for those with chronic illness or a history of poverty, abuse or alcoholism – this mental state can be even more challenging to access.

Let me give you an example in my own life. I got sick when I was a child and my painful, unpredictable illness was compounded by the fact that my parents were alcoholics. While my parents were neither abusive or violent, they were often irrational due to their alcohol dependency. We would have the same experience, witnessing a  fender-bender during a drive to the cottage for instance, but have totally different perceptions of reality. My memory of the event would be fairly fixed, but as I heard my parents relate the event to others, their account would swing wildly depending on how much they had to drink or who they were talking to. One moment the fender-bender would be a major accident filled with details of blood and body-bags. The next telling of the story may involve non-existent conversations with police or other bystanders. Then when asked to recount the incident a week later, they would have totally forgotten it.

You can imagine what happens to a child who is surrounded by people whose reality is so elastic. It becomes very difficult for that child to trust what they see and hear. That mistrust often continues into adulthood.

Mistrust in self judgement is one thing. Mistrust in fate or chance is another. When a person is struck down by an illness that they had no part in creating, it becomes difficult for them to trust in fate. Fate hurts. Chance hurts. You can’t just assume that things will be okay when your body is a ticking time-bomb and you don’t know when it is set to go off.

Up until recently my view of life was that my controlling, analytical self was responsible for everything positive I had accomplished. Fate and chance were my enemies – making me sick and throwing obstacles in my way. The more I controlled, focused and analyzed the better off I would be. Eventually I realized that this model of my world was somewhat one-sided and that trust in myself and trust in fate were important tools that would help me tackle problems in a more efficient way and remain more relaxed in the process.

The point of the post is this… I know so many people who try to meditate or relax or otherwise try to gain the clarity of mind that comes with silencing the inner critic of Self One. At a certain point, on their way to this clarity, many people get stuck. They stop progressing and throw in the towel.

Before this happens, ask yourself these questions: Do I trust my inner self? Do I trust fate or chance? If the answer is no, try to determine why. Be honest about your view of the world. Is it a view that promotes the growth of yourself as a person? If not, perhaps that view is due for a change.

For this week’s blog post, I will direct you to a website that  deals with the subject of unleashing your creativity. In The Power of Choice, I talk about how important choice is for any creative endeavor. No matter how physically limiting our situation is, we often have more choice than we think. Enjoy the post. The blog is called Thoughtwrestling.

Timothy Gallwey’s The Inner Game of Work is a great read for anyone interested in performing their best.

The book is based on The Inner Game of Tennis, where Gallwey made some interesting discoveries about how people learn. He observed that his tennis students who constantly put pressure on themselves to improve a specific part of their game did not improve nearly as well as those students he told NOT to consciously try to improve their game but to merely observe the ball closely when hitting it.

His theory is that we have two parts to ourselves. Self One is conscious and analytical, concentrating on what we do wrong and telling us we need to try harder.

Contrast that with Self Two. Self Two represents the learning potential inherent in all of us. It’s the thing that helps small children learn languages at an astonishing rate (even though they’ve never read a book on grammar). Children make lots of mistakes and learn from them but don’t get caught up in the self-doubt or analysis that adults do. For children this sort of learning is fun and easy because they are not concentrating on learning. They’re just doing something that’s interesting to them.

Self Two has an incredible amount of potential and it doesn’t necessarily go away as we get older. Athletes and musicians use Self Two when they are “in the zone” – performing at their best, but not consciously thinking about what they are doing.
Gallwey offers a simple formula for the Inner Game happening in our heads.

P = p-i
Performance = potential – interference

The potential comes from Self Two. Interference comes from Self One.
For an example of how this works I offer my own experience learning electric guitar. When I was feeling pressured to learn a new song during a session with the band I would invariably have trouble, because I was trying too hard (using Self One) to remember all the notes. When I was at home and learning by myself, I was more relaxed. Because I wasn’t as self-conscious, I didn’t feel the need to memorize, and the notes just sort of came to me. I was using the innate abilities of Self Two.
This is a very powerful tool, but one that can be difficult to use. You can’t use force on Self Two. It does what it does on its own time, but if you keep yourself interested and relaxed, and are willing to make mistakes, Self Two will figure it out.
Unfortunately we live in a fast and impatient world. We don’t give Self Two enough time or credit. We cram for exams, we “try harder”, we beat ourselves up over our “failures” and we ultimately cheat ourselves out of our own potential.

Living a Self Two life is not only more productive, it is also much more fun. We feel better about ourselves. Things come easier. Nothing seems like work.

However, there are some crucial elements that are needed for proper Self Two thinking that I sometime struggle with. That is trust in one’s inner self and trust in the areas of chance and fate. These can be difficult areas for people with chronic illness or adversity to explore. I will share my own experiences and examples in my next post.

addendum:

Shortly after finishing this post, I received the latest post from a great website called Lateral Action which discussed this same theory, but using different terms and examples.

Helping people grow, develop and perform to their potential is a wonderful thing. In my years as both a TV Producer and News Manager, I would say it was by far the most rewarding part of my job.

Some people have a natural developmental bias. That means they are inclined towards helping others achieve their goals. There are many people that don’t have this bias. It doesn’t mean they are bad or selfish people they just don’t enjoy teaching, mentoring or coaching.

Coaching is about balancing your life and allowing your strengths to flow effortlessly

Last week, I decided to add to my years of experience by taking a coaching course. I chose a school called Adler which is affiliated with The University of Toronto. I chose it because I knew it had a great reputation and that it was challenging.

I was in a class with 14 other coaches. These were people from a wide range of work-backgrounds and experiences. Our task was to:

• fully and deeply listen to our clients
• ask thoughtful questions to help the client discover what they really wanted out of life
• identify the obstacles that kept them from getting there
• helped them devise a plan of action that was comfortable for them.

While this sounds simple it is not. First of all, each person is different and as a result no two coaching sessions will be the same. Secondly, the type of communication involved (deep listening and open questions) is something most of us don’t do a lot of at work or even in our social life.

The coaching sessions were real, meaning we were  coaching each other. As a result, we had to work through actual issues and problems in our lives. This requires a willingness to be open and honest and answer some tough questions about yourself. There were many emotional moments, but through the support and confidentiality of the group we not only came to realizations about ourselves but also demonstrated the power of listening and explored the infinite resources each of us has to make our own lives better.

These powerful coaching tools do work. If you have an issue or obstacle to overcome in your personal life, relationships or career – coaching can help. It can also allow you find balance in the demanding, high pressured and fast-paced routine we now call our lives.

Coaching can be particularly beneficial for those living with chronic illness (such as arthritis, heart disease, diabetes, Crohn’s and colitis, asthma, MS, lupus and others) who want a fulfilling career, a balanced life and personal growth, but are slowed or challenged by their unpredictable health. Being coached by someone who has faced the same challenges can make a big difference.

Coaching can take place in person or over the phone. For more information on my coaching sessions, or to book a free no-obligation introductory session, please contact me at jason@sickwithsuccess.com

In the trillion dollar problem I talked about the cost of chronic illness to productivity.

There is also the  issue  of skyrocketing medical costs in Canada and the United States. Part of the solution is basic. Give people access to family doctors.  Of course, most of us have a family doctor but how long does it take to see him or her?

It is very expensive (and slow) to treat someone in a hospital emergency room when the ailment is something that could be dealt with by a family physician. For people with chronic illness, access to a family doctor who can regularly monitor their overall health as well as tend to basic maintenance of their condition is critical. Unfortunately, it doesn’t happen as quickly as it should.

Wait times by country. Click to enlarge.

Research by The Commonwealth Fund shows that only 36 percent of Canadians got a same day or next day appointment when they needed medical attention and a third of them had to wait more than A WEEK. Results in the United States are somewhat better, but still pale in comparison to Australia, New Zealand, and many European countries where waiting times were much shorter.

Of course, even without seeing the numbers, those of us in North America know from experience about wait times. It sometimes takes me almost two weeks see my own family doctor. Think about how ridiculous that sounds.

What is the cost of long wait times for doctors?

As I mentioned before, using a hospital emergency room in lieu of a family physician is wasteful and inefficient. But this isn’t the only cost. If people who need medical attention are waiting for a week or more to get it, what is that doing to their productivity at work? How badly are their medical conditions deteriorating? While I don’t have exact numbers on how much tardy medical treatment costs organizations, I imagine it is significant.

What to do to shorten wait times for doctors

Well in the big picture we need to move from a system that caters to acute illness to one that recognizes the challenges of chronic illness.  There obviously needs to be more incentives to get people to practice family medicine, but there are other strategies that can make the system more efficient.

The countries that have been most successful in reducing wait times practice more of a team approach to health where nurses work with nutritionists and other health professionals under the supervision of a doctor. The doctor is therefore overseeing care but many of the operational details (such as injections, vital signs etc.) are being done by others who can do them more efficiently and allow the doctors to treat more patients.

Ultimately, our health care system is much like a house, if the basic foundation is weak it threatens the whole structure.

Over a trillion dollars in lost productivity

Over a trillion dollars. That’s how much chronic illness costs businesses in the United States alone in lost productivity according to an independent think tank.  Taking into account population differences, we would be talking about a hundred billion dollars in Canada. Combine the two and we have some pretty serious cash. What’s worse, the numbers are expected to quadruple by 2030.

A trillion dollars alone makes the mind boggle. That’s a million million.  What could you do if you had a trillion dollars?

Buy every share of every stock on the Toronto Stock Exchange.

or

Fund the military of every NATO country combined for year.

or

Pay all the rent cheques for everyone in the United States for three years.

You would think with so much money at stake, more people would be talking about this issue.

Why is this such a problem?

Some of this productivity loss is due to presenteeism – where people show up for work but aren’t productive during their time on the job.  Things like obsesity and other “lifestyle” illnesses get the brunt of the blame in the media, but there are other important forces at play in this trillion dollar game.

1. Many chronic illnesses are invisible.

2. Many people do not tell their employers or managers because of the worry of being stigmatized or losing their jobs

3. Many of these same people do not monitor or attend to their illness (ie. take their proper medications etc) while at work because they don’t want people to know they are sick.

4. Many organizations are still slow to offer flexible work arrangements that will allow employees to be more productive during the time they are at work.

Creating an open and Results Oriented Work Environment can go a long way to reducing these numbers. Businesses that are smart enough to realize this will have a competitive advantage as chronic illness affects more and more of the labor force.