Living with forever

Accepting a life with chronic illness

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I didn't realize how much I had taken for granted until my second academic year, fall 2007. While I have tried to remind myself that there are much worse things than developing chronic pain syndrome, I have certainly had some lows along my journey.

There are many people who would rather pretend to be a "normal" person (without health issues) than admit to the limitations and challenges they face daily. These people are referred to as the "walking wounded" by some health practitioners. But what is the definition of "normal"? According to Statistics Canada, in 2006, 14.3 per cent of Canadians (4.41 million) managed a disability -- fast forward four years, and 4.27 million Canadians aged 12 and up suffered injuries severe enough to limit their activities in 2009-2010, costing Canada $93 billion a year (in both direct health costs and indirect productivity losses). It really is not if you will develop a disabling health condition, but when.

I took for granted the usual things: my body, health, future goals, and daily things like physical comfort and energy levels. Since I was diagnosed with chronic pain syndrome I have had to give up caffeine, alcohol, late-night partying, competitive sports and anything else where I could fall. I have also had to deal with the physical reminder of ranging levels of pain and constant discomfort.

After my diagnosis, I felt like I lost myself as a person. In 2005, I had placed second in Canada for wrestling in the 65 kg weight category. That year, I started university, paying tuition completely on scholarships, and was one of the top students in my class.

Six months later, after a whiplash injury and a concussion, I couldn't even recognize myself. I often compared how I felt to the grief one feels after the death of a person -- I had a 10-year plan to go to the Olympics twice and then retire, and this illness was not part of that plan. I was in serious denial about my situation, unwilling to identify myself as disabled. Perhaps it's because I didn't want the stigma, but also because I didn't want to admit the all-round effect my condition has had on my health.

The development of cps was difficult to come to terms with, and it was also difficult for doctors to understand what was wrong since I was very young to have developed this type of nervous system disorder. There are a lot of people out there who believe pain is not something that can impair a person. The common assumption is that you get used to the pain, you heal and you move on. But when your nervous system is impaired and there is nothing to heal, what then?

When it comes to chronic pain disorders, the pain begins to affect your entire life. Many health professionals compare it to chronic fatigue syndrome, as the body starts reacting in similar ways. You become easily tired, lose energy and become overwhelmed by too much stimulus. It is also a musculoskeletal disorder because the muscles start to create trigger points (hyperirritable palpable nodules present in taut bands of skeletal muscle fibre) and physical limitations. The nerves start to behave incorrectly and develop incorrect pathways that reinforce the pain.

The pain has an effect on mental health and everyday activities. The brain becomes distracted by the pain and discomfort, which can create a problem with attention, memory and learning, or even completely limit the individual's ability to function for variable periods of time. This can lead to depression, anxiety and other mental health problems, which can in turn worsen the pain in a very cyclical manner.

My symptoms at first were unbearable pain and having difficulty both sleeping and staying awake. I missed classes and, when I did attend class, I would either fall asleep or be so distracted by discomfort and pain that I was not able to absorb what was being taught. Each day the headaches were different, as was the physical muscular pain. It left me emotionally unwell -- I was sure I was going crazy. Today I have improved through treatment, but if something emotionally upsets me or if I fall badly on a patch of ice, it can ruin my entire day and take a few days to bounce back. I often feel like a robot that requires frequent adjustments, oil and re-programming.

Throughout this personal battle I felt alone, despite being a member of 30 per cent of the population that is affected by chronic pain of some degree. Chronic conditions are often downplayed, so even if many suffer from them, it is difficult to find a common support system. Many patients, particularly those with chronic pain, are expected to just deal with the condition on their own -- to "just get over it." But chronic symptoms need management through lifestyle change and medication.

The Constitution of the World Health Organization (1946) states that good health is a state of complete physical, social and mental well-being, and not merely the absence of disease or infirmity. Yet due to the limitations we set up within our society, our attitude toward illness and disability is as much a part of what makes a disability limiting as is the health condition itself.

Davis DeSouza is a business student at the University of Calgary in his last year who also faces chronic illness, though he keeps his daily challenges private most of the time.

"When it comes to being a diabetic, a lot of it is about your personal choices and how well you want to take care of yourself. I remember getting a handbook when I was diagnosed, and it just had a guy on the front of it juggling balls -- that is what it is like when you have diabetes, you are juggling all of these different things and you have to keep them all up in the air. As soon as I drop the ball on one part, it's all gone," he said.

DeSouza was seven years old when he was diagnosed with Type 1 diabetes, and he attributes his ability to cope as an adult to the care he received as a child.

"One of the better parts of being young when you are diagnosed is your support system. I don't think I would have the same understanding of how to take care of myself," said DeSouza. "The Children's Hospital in Calgary is really hands-on because they have to make sure your parents know what to do, because they are responsible for you for the next 10 years, and that you know what to do, and that you are developing the skills to be able to use when you are older."

But DeSouza explains that being diagnosed as a child also meant teasing, a strict schedule and meal plan, as well as unresolvable questions and concepts like the meaning of permanent disability. "When I was [diagnosed at] seven years old, I thought I would just take a couple needles for a couple months. I thought by school next year I would be fine -- you don't really understand forever when you are seven years old." However, it is the psychological aspect of teasing and misunderstandings that is often the most difficult part, DeSouza adds. He explains people don't understand that diabetes affects more than the physical body.

"It's not, 'I'm on a diet, I use insulin.' It's not, 'he just has to watch what he eats.' It affects every moment of every day for the rest of my entire life. There are rare times where it is not with me mentally. It affects your mood, your weight, your looks, how you feel about yourself and how you feel about others. It affects everything."

DeSouza is not alone in feeling misunderstood by people lacking the experience of a chronic health condition, but he expresses that people with chronic conditions also have difficulty understanding others with chronic conditions because everyone's experience is unique.

Megan McLelland is a pedagogy alumna from the University of Calgary now working as a gym teacher. She is thankful it was during her fourth year in university that she found out she had Crohn's disease. As a varsity athlete on the U of C women's soccer team and an active member of the faculty of Kinesiology, she explains that the two months of school she missed almost set her back an entire year, but instead she was able to get by on deferrals and understanding from her professors. The mentality of "we will help you finish" was McLelland's greatest support during her last academic year.

"I was really lucky because my professors helped me get through it. That was what made the difference -- they respected me as a student and they didn't want me to lose that year if I could avoid it."

Crohn's disease is the chronic inflammation of the intestines. McLelland believes she is lucky that her form of the disease is quite manageable at the moment, but it was very difficult at first. Some people have a slow development of symptoms over years before it becomes a problem. It was only five days after the first symptoms presented that McLelland was hospitalized, and it was a few weeks before she left the hospital, and a few more until she could return to school. McLelland lost 14 kg in a matter of weeks. Five years later, she believes she has the disease under control, due in part to her lifestyle choices.

"In reflecting on the past, what I've learned is to give yourself the time just to be. Step back, you don't need to keep going 100 per cent. When having an off-day, I am running to the washroom every hour just because my body is trying to get rid of something. I can't focus, and I am irritable," McLelland explains. "Yoga gives me my own space in the morning. It was so important for me to find my own space because before I never did, it was always 'go, go, go!'"

More than just lifestyle changes, McLelland has also re-learned the meaning of physical activity and, as a former athlete myself, I have had similar lessons.

"When I was younger, physical activity was organized sports and it essentially was training for sports. It is now about being active for life," she added. "I need to keep myself in reasonable shape for my health."

Though McLelland has had a positive experience with colleagues and professors being helpful and understanding, DeSouza's experience at school has had its challenges. DeSouza describes an unfortunate situation where a professor became verbally abusive during an exam in 2011 while DeSouza's body was going into shock from low blood sugars.

"I had asked if I could stop writing and come back when I felt better, and I was basically treated like I was trying to cheat. It was degrading and I don't think I was treated with any dignity or respect -- I am not a cheater," explains DeSouza. He adds that more understanding and trust about chronic conditions would go a long way to preventing further experiences in either academics or the workplace. "It's not just physical and people can't see what is going on. He [the professor] couldn't see that my body was in shock and [that] it affected me mentally."

Since being diagnosed with our chronic conditions, DeSouza, McLelland and myself have put a lot of thought towards our futures. McLelland wonders about when she and her new husband will be able to have children and how many she can physically cope with. DeSouza privately worries about his potential future dream career as a pilot, the cost of affording insulin and other medical devices, and how it will play into his future relationships.

But DeSouza says he doesn't worry more than anyone else would about future decisions. He has had to grow as a person to be smarter about the decisions he makes. There are decisions we choose; sometimes we make the wrong decision and it costs us. But each of us has our own needs based on social, economical, demographical and geographical circumstances.

Colleen Braun, a clinical psychologist, educator and organizational consultant based in Calgary, has been involved in the treatment of individuals with chronic health conditions. Through her years treating patients, she knows the lack of understanding chronic illness sufferers face. She believes as a society that we need to give people the freedom to meet their needs in an equal manner, rather than impose strict limitations and force people to live around them.

"When we create structures -- architectural structures, educational structures or even human resource structures -- we should design them so we are not having to single out people with disabilities," she said.

Still, the majority of people don't seem to understand chronic health conditions or how to be respectful. Braun believes it has a lot to do with fear and denial about our vulnerability and mortality.

Disability has as much to do with how we look after our needs and ourselves, Braun adds, including how we engage with people, and behave regarding each of our specific needs.

"Everyone has problems, and when you have a chronic illness, that just adds another dimension, so in order to treat the chronic illness you have to help the person deal with the other problems in their life. Then the strategies or the medications that are available will be more effective," Braun explains.

"If you are trying to push a boulder up a mountain, that isn't going to work. But if you are able to chip off a lot of it, it is going to make it easier to get it up there."




As we all know, life is hard for everyone, but chronic pain sufferers are faced with additional and seemingly insurmountable challenges. To make things worse, their plight is often misunderstood by family, friends and even their doctor.

When the cause of chronic muscle and joint pain was not understood, the best that healthcare professionals could do was manage the pain symptoms. And if they were unable to do so, instead of admitting to their own failure, they would send you to a psychologist in order to handle your emotions and depression.

All that has changed. The cause of chronic pain, in many cases, has been found to originate in two inherited, abnormal foot structures that predispose people to developing chronic musculoskeletal pain. When the pain symptoms begin, varies immensely from person to person, depending on many contributing factors such as, weight, nutrition, stress levels, injuries, etc.

Thanks to research in the area of proprioceptive stimulation, chronic pain resulting from these abnormal foot structures can be permanently eliminated. Through the use of this type of therapy, those suffering with chronic pain no longer need to live their life in pain management.

This is an excellent article. I have had chronic pain for over twenty-two years. Not even my strong pain meds help anymore and I\'ve tried everything. I, too, wish people would be more understanding, but I\'ve had to isolate myself because they were too judgemental when I couldn\'t keep up. If they don\'t feel it, they don\'t understand. Mine probably began because I was born with flat feet, as the person who commented previously stated and it has messed up my spine. I have had ovarian cancer recently probably due to the stress of my pain levels. I am grateful for many things and people in my life which keep me going. Stay strong and God bless. Jan