Certain truths become apparent when one is diagnosed with a chronic condition: life changes and we must learn to adapt; there are many health-related questions, decisions and choices to make; information and tools are required to find answers and manage successfully. It is our responsibility to embark on a journey of lifelong learning.
This responsibility can overwhelm and confuse us at any stage of our chronic condition journey, whether newly diagnosed or having lived with the disease for many years. We may choose to ignore our chronic condition and hope it eventually goes away, growing so accustomed to it that it becomes our new normal. This attitude puts us in a holding pattern and robs us of the time necessary to deal with our responsibly to learn and put self-management strategies and tools to good use.
Included among the first decisions after a diagnosis lies the answer to these questions: “Will I ignore this? Manage it on my own? Or seek help?” The conclusion can influence the outcome of our lives.
What follows is my story about decisions, a sense of responsibility and how my point of view changed while living over 60 years with chronic conditions.
I was 14 when the first symptoms, pain and stiffness presented themselves. It subsided for two years and was explained away as a sports injury. I never gave it another thought until, at 16, it came back with a vengeance, waking one morning with intense pain, unable to get out of bed without help. Standing and walking were an unbearable challenge. I needed answers.
After many months and doctors’ visits, my diagnosis became apparent: ankylosing spondylitis (a type of inflammatory arthritis in a group of diseases known as spondyloarthropies). I was told it may never go away, it may improve, or it may “burn out” over time.
Unlikely as it was to occur, I chose to believe the latter, until many years later, when the disease’s inflammatory progression faded any harboured hope. It was then that the best decision along my chronic condition’s path presented itself. My fork in the road came in the form of an invitation to be trained as a self-management program leader. It was decision time. The program sounded good, but my attitude was bad. I had a closed mind, convinced there was nothing in this class I hadn’t figured out on my own, after years of what I thought was coping.
It took less than a day, during my training, to understand just how wrong I was. I learned self-management tools, actual strategies for coping, and problem-solving techniques. I realized no matter what chronic illness others lived with, we all had a common goal: to live a happier and healthier life. We felt empowered learning and practicing new tools for dealing with symptoms and developing our problem-solving skills; learning from both the class and each other’s shared past experiences.
Previously, I had learned a lot about my chronic condition by deciding to become a founding member of its provincial association, eventually editing their newsletter and reporting on their monthly guest speakers’ lectures. This level of participation encouraged me along my lifelong learning path. But, becoming involved in self-management programs was a major turning point in my life. I felt myself regaining control, knowing there was a lot I could do to assure myself of the best possible outcome. I was responsible for making good choices when it came to going to the doctor, arriving prepared, taking part in the decision-making process, communicating… and the list goes on.
There were many things I didn’t know back then; many things I still have to learn. The most important realization, however, is that how I manage my chronic condition(s) is *my* responsibility. One thing has always bothered me more than anything else with each new challenging chronic disease I’ve faced is a greater sense of loss of control over life. Learning and practicing self-management skills is a huge step towards gaining back that loss.
To someone diagnosed with a chronic illness, taking on the additional responsibility of being proactive, in hopes of regaining a sense of control over their life, may seem overwhelming. The process of learning self-management skills can be daunting. Perhaps, that’s why I’m sharing my story. Is it possible, after reading this article, that others, like me, may be encouraged to look at their chronic condition in a new way?
Making the crucial decision to learn and practice self-management is the first step down the right path towards successful living with a chronic condition, but where does one start?
Recently, I took another step on my path. I attended an enjoyable and informative training workshop. There were several like-minded people, all believers in the benefits of self-management and wanting to share their knowledge and experience to encourage others like themselves. We were trained as Health Coaches for a new province-wide program. Today, I was matched up with a new participant and now look forward to making my first Self-Management Health Coach Program call this week.
By helping others as a self-management health coach, I have also helped myself and improved my quality of life. I have learned, and lifted my spirits. And, I’m confident this is another good decision while I continue travelling along my life’s path.
The Self-Management Health Coach Program is a telephone-based coaching program to support people living with chronic conditions to become better self-managers. Health Coaches connect with participants once a week for 30 minutes for a period of three months. Coaching can be extended for another three months upon a mutual agreement between all parties.
Health Coaches can help participants to:
* Choose goals and actions they want to take to better manage their health
* Identify and problem-solve barriers to being healthier
* Become more self-confident
* Be motivated to initiate and maintain health-behaviour changes.
* Coaches provide a dimension of support that complements and enhances professional health care; they DO NOT provide medical or clinical advice or treatment. Participants are paired based on gender, age and/or shared chronic health condition(s). Health Coaches will always be the one to call their participants.
For many people, chronic health conditions can be extremely trying. They may benefit from having the extra support person in the form of a Health Coach to face the daily challenges of living with chronic conditions. The program is FREE and participants receive the Living a Healthy Life with Chronic Conditions book.
If you, or someone you know, would like to register and receive a weekly, 30-minute phone call to share self-management strategies and learn new ones, contact:
University of Victoria
Institute on Aging & Lifelong Health
Phone: 604-940-1273 or 1-866-902-3767
Or e-mail: email@example.com
Check out the Self-Management BC website for other available programs