Thursday, September 29, 2011

Chronic Illness: Dealing with the Day to Day Challenges

Illness can sneak into your life like a whisper of waves in the distance you barely hear, or hit you like an eathquake. Either way, you may suffer a gauntlet of pain, fear, frustration and isolation. In a country as robust as the United States, it's hard to believe that one in every three people has a chronic illness, but it's true. According to the National Centers for Disease Control and Prevention, These illnesses cause major problems in daily living for more than one in 10 Americans -- about 30 million people!

The biggest disabler is arthritis, followed by back pain. Five others --heart disease, cancer and/or it's treatment complications, stroke, chronic lung disease and diabetes -- account for more than two thirds of all U.S. deaths. Mental health illnesses, add a huge tool. The National Institute of Mental Health estimates that about one in five adults suffer from a diagnosable mental disorder in any given year such as  anxiety, depression and post traumatic stress disorders related to chronic illness and it's day to day challenges. 

Four of the 10 leading causes of disability are mental health disorders:  major  depression, bi-polar disorder, schizophrenia and obssesive compulsive disorder. Vast numbers of people go untreated, even though effective treatments are available. In this blog post I am sharing a few things that helped me through my private journey with chronic illness (mixed connective tissue disease, spinal chord injury and cancer) and it's sidekicks; anxiety, depression, post traumatic stress disorder. 

Mixed connective tissue disease is a difficult to diagnose auto-immune disorder. After 10 years of declining health, seemingly unrelated symptons, doctors, hospitals, diagnostic tests and specialist consultations I finally received my diagnos at age 35, but it took 6 years of searching to discover a combination of treatments that worked for me. And then on my 41st birthday I received the gift of cancer!

The past 7 years have been a whirlwind of doctors, hospitals and medical drama, not only was I diagnosed with a chronic illness and a potentially deadly disease, my then teenage son (a star athlete and honor roll student) suffered a traumatic brain injury, my father was diagnosed with stage IV leiomyosarcoma (we provided hospice care at home for him), my childrens' father was diagnosed with stage IV esophageal cancer and my daughter was diagnosed with stage II thyroid cancer a few weeks after her 21st birthday and days after one of my major surgeries.

Most of that time,  I was unable to work,  spent most of my time in bed and disabled, plundering away my life savings on healthcare costs and, as a single mother, supporting my children through their own healthcare crisis journey.  Not exactly the most ideal circumstances for the necessary rest and relaxation we all hear about is essential for recovery and peace of mind. Yet I endured, recovered and here I am! Whatever your own situation, you can help yourself feel empowered, serene and hopeful about the future.


Even if doctors could know everything that you should know about your illness, they would never, ever have the time to tell you. Doctors work in an increasingly complex medical system that often pressures them with conflicting demands and ever increasing regulations and paperwork. Patients on the other hand, can get health information more quickly (and cheaply) than ever before.

Thanks to the internet, anyone today can get excellent, easy to understand and up to date material about practically any health problem. Unfortunately, many of the sickest people - particularly the elderly, the poor and members of some minorities - are least likely to have computer skills and internet access.  If you are one of these people (or you know someone facing a chronic health challenge) you don't have to be shut out. Ask for (or give) a helping hand.

Any religious congregation with a youth group is likely to have computer savvy teens who would be happy to make a few dollars or volunteer an hour or two to do some simple internet searches and print out results for you.  Or you might find a college student  by posting a notice on a campus bulletin board. You could also try calling social service agencies or public libraries. Commercial internet booksellers  are also searchable by topic and can be invaluable in identifying and obtaining the latest books, audiotapes, and videos  by professionals and patients. Many used books are for sale at discount prices or are available at your local library.


Illness, like rain,  falls on people in every possible spiritual state. Revitalizing  your spirit and deepening your spiritual life may be the door to becoming whole and well. It really made a difference in my personal journey. f you are active in a religious community, it may have a special healing ministry or literature. If you're too sick to seek it out or participate, ask for help or set a goal to get yourself well enough to show up. And don't underestimate the power of simply telling God that you hurt, you're afraid and you need His help. It can be one of the most effective prayers you ever make.

In the Christian faith, the healing ministry of Jesus communicates clearly the desire of God for people to be well. Yet Jesus' willingness to die and His resurrection dramatize that life on earth is not the ultimate goal or the greatest gift of His love.  None of us is here to stay. If illness is threatening your life (as it did mine and the lives of those I love most),  you believe you will always be sick or you know factually you will be (as is the case with certain illnesses) spiritual renewal can give your days meaning when otherwise they migh have none.


When I learned that I had mixed connective tissue disease, I also learned that most experts in this condition recommend some form of daily exercise, indirect sunlight 15-30 minutes a day and lots of vitamins (particularly B12, Folic Acid and C-Complex). With increasing difficulty breathing, excruciating  muscle pain, joint sweeling and extreme fatigue the prospect of daily exercise seemed daunting but I resolved to do what needed to be done and enrolled at the local YMWCA for a "senior" Aqua Exercise Class made some new friends and began driving a group of my "young at heart" friends to Garrett Mountain twice a week for nature walks! 

Once I was diagnosed with cancer and began treatment  "brain fog", a common side effect and sometimes long term complicaton of chemotherapy, in which the mind always feels desperately tired and thoughts are perpetually gauzy, had become a daily problem  the idea of driving to the YMWCA for aqua exercises or anywhere for that matter  was a scary and dangerous proposition. The solution? My son bought me a puppy! At first I was worried about the care demands of this animal, but soon Mr. Max Schanuzer became a beloved family member and daily walks with him around our neighborhood my window to renewed energy and life!

It wasn't always pretty, sometimes I must have looked like a scare crow: pale, skynny or swollen depending on the day, week or month of treatment, no hair or "duckling-peach-fuzz", frail, slow or limping, many, many  times ridiculously dressed for the weather (either too cold or too hot not necessarily following the seasons) but always and forever grateful for my happy go lucky dog, walking me around, making me laugh and motivating me to go on and participate in life through exercise. It was something neither mixed connective tissue disease or cancer would not take from me and better than sitting in front of the couch, watching TV and everything I could "not" do.

Dogs aren't for everyone but if you take a matter of fact, unashamed look at your habits, it will be easier to stay open to the idea of changing them for the better, even if you've tried and failed in the past. We put ourselves in harm's way by our personal behaviours and habits such as, smoking, overeating, drinking too much alchohol or caffeine, exercising too little or not at all and undergoing too much "stress by choice".

If your body is ill, it is in crisis!  Changes you make, changes you can make, may help it more than anything a doctor does. New approaches to making personal changes in our lives, whatever they need to be for us individually and new avenues for getting emotional, psychological and financial support emerge continually. One may help you. Never give up your search. Hope matters!


What feels better than laughing? The potent medicine of laughter wins praise in quarters as varied as the Holy Bible and the Journal of the American Medical Association. Doctors  were writing about the benefits of laughter more than a century ago! But it took magazine editor Norman Cousins to put laughter on the popular medical map. In his 1979 book Anatomy of an Illness as Perceived by the Patient, Cousins described his recovery from a serious illnesswith humor's help. He had discovered that ten minutes of belly laughter gave him two hours of pain free sleep!

The practical value of laughter became a major feature of his treatment and why not? I can personally attest to how much the silly little antics of my beloved dog helped me through the darkest of days both emotionally and physically when recovering from major intra-abdominal surgery (pelvic reconstruction) the physical pain was non responsive to pain medication and the only choice I was given was a morphine pump. I refused the morphine pump and I know I made it through those dark days with laughter, courtesy of Mr. Max Schnauzer. Today getting patients to laugh is part of medical programs ranging from pediatric wards to hospices.


Human history shines with individuals who have prevailed through awful illnesses. From the 16th Century Spanish mystic Teresa of Avila to modern day British physicist Stephen Hawking, people have managed astonishing achievements despite severe illness and/or dissability. I found supreme inspiraton in Christopher Reeves, the handsome actor best known for his role in the Superman movies. Reeve's fall from a horse during a 1995 riding competition broke his neck and paralyzed him. It did not, however, impair his courage, initiative  or creativity.

Christopher Reeves started a foundation to fund research into spinal chord injuries, and traveled the world to promote the cause. He continued to write, direct and even act! He authoted books about his life and won a Grammy award for recording one of them. He remained a caring, husband and father with a loving wife and three children by his side to care for. He did all this while in a wheelchair and on a ventilator, paralyzed!

Many chronic illnesses, especially mental and emotional ones, still carry a stigma, no matter what that illness may be or why it affects you or someone you love. Anxiety, depression and post traumatic stress disorder after diagnosis, during treatment or as a survivor of a life altering, life threatening medical condition is very common. No matter what, you deserve non-judgmental support from healthcare providers, family, friends and colleagues. You may have to help them up a learning curve. But you should not put up with being ashamed and should never shame yourself for your illness and emotional and psychological complications of living with a chronic health condition.

Life is full of journeys that we don't plan, and even the difficult ones have a high road worth seeking. Don't get discouraged if you take the wrong turn every now and then. Bad experiences are part of life as well as good ones. And resist any efforts to hurry or pressure you into making health care decisions, even if they seem urgent at the time. Remember that YOU lead your personal journey, at your pace, one step at a time.

1 comment:

  1. What a wonderful post for anyone with chronic illness to read. It says it all. Thank you and bless you for sharing such wise words!