Living Positively with Long-term Illness

Living with a chronic condition can feel like

an uphill hike that never ends

with a heavy pack you can never set down.

At least, that’s how it feels for me. For almost 40 years, I’ve been living with Type 1 diabetes.

That means since I was a kid, I have had to:

• test my urine and blood sugars multiple times a day (and night)

• calculate and inject insulin to match my food intake

• plan every meal and anticipate every episode of physical exercise

• make sure my blood sugars are in a safe range before I get behind the wheel, get the mail, or go to bed

• deal with the impacts of illness, stress and hormones on blood sugars

• carry extra food, testing equipment and pump supplies with me at all times

• attempt to prevent or delay long-term complications, like vision loss, nerve damage and diminished kidney function

• manage common “companion” diagnoses, like hypothyroidism, high cholesterol, migraines and depression

And don’t even get me started on all the extras if you want to become or stay pregnant, deliver a baby or breastfeed!

And those are just the physiological implications of diabetes.

There’s also the stress and burden of added expenses for medications and supplies (many of which are not covered by insurance “providers”); being uninsurable on my mortgage; paying higher premiums for other insurance because of my “pre-existing” condition (despite the fact I’m healthier than much of the population); the missed work and lowered productivity due to medical appointments and impacts of too high or too low blood sugar; the unwanted commenting on what or how much I’m eating by people who feel entitled to provide their “expert” opinion; and the reprimanding, tsk-tsking and occasional encouragement (followed quickly by “but, you could do better”) from my actual medical professionals over the years. So fun!

Rant over.

I share this not to complain, but to inform.

So many of us who manage ongoing illness look “normal” on the outside, yet we feel both compromised on the inside (and keep on keeping on despite it) and carry an enormous burden of additional considerations, decisions and stress.

I know I’m not unique, and I also know I have it a lot better than a lot of people. In fact, almost half (44%) of Canadians over the age of 20 will experience one or more of the 10 most common chronic conditions (diseases or conditions that are considered treatable, or manageable, but not curable) including hypertension, cancer, heart disease, diabetes, mood disorders, arthritis, osteoporosis, asthma, COPD and dementia, not to mention other common long-term conditions like multiple sclerosis, effects of stroke, Alzheimer’s disease, HIV/AIDS, Parkinson’s disease, lupus and good old chronic pain.

It is well-documented that people with chronic illnesses have an increased propensity to also suffer from mental illness, including increased stress, anxiety, depression and feelings of isolation, and for diabetics, sometimes even eating disorders and suicide.

“A strong association exists between various chronic medical conditions and an increased prevalence of major depression. ... This association may result from physiological changes associated with these conditions, such as changes in various neurotransmitters, hormones and the immune system, or from associated disability and poor quality of life. In addition, some medications used to treat physical illnesses tend to cause depression. People who cope with more than one medical condition may be at particular risk for depression.” Source

And in the case of diabetes, in particular:

The prevalence of clinically relevant depressive symptoms among people with diabetes is approximately 30% (40–42). The prevalence of MDD {Major Depressive Disorder} is approximately 10% (43,44), which is double the overall prevalence in people without a chronic medical illness. The risk of developing MDD increases the longer a person has diabetes (45). … Depression in people with diabetes amplifies symptom burden by a factor of about 4 (49). Episodes of depression in individuals with diabetes are likely to last longer and have a higher chance of recurrence compared to those without diabetes (50). Episodes of severe hypoglycemia have been correlated with the severity of depressive symptoms (51,52). Major depressive disorder has been found to be underdiagnosed in people with diabetes (53).” Source

So, what to do? Does managing a long-term illness automatically mean you have to live stressed out, worried, and exhausted from the extra load? Does a diagnosis mean your quality of life will be forever diminished?

Not necessarily.

Not if you choose to live as fully as you can. Not if you choose to thrive, despite a diagnosis.

But how?

It’s not enough to want something, right? That doesn’t make it magically so. We are not Jean-Luc Picard.

I didn’t always have a healthy positive outlook on my condition. At times, I railed against it, denied it, ignored it and sank into depression about and because of it. I tried counselling, medication, exercise, group programs, journalling, coaching, reading, meditation…all the things.

What helped? I cobbled together a made-for-me toolkit consisting of bits and pieces from various supports and sources over the years, until I found the thing that really worked: getting a cancer diagnosis.

(I’m not recommending you go get yourself a cancer diagnosis! I hope you never have to experience that.)

Okay, so maybe it wasn’t the diagnosis itself that helped me shift my thinking; it was the gift that diagnosis gave me. Stay with me here.

When your life is on the line, your priorities and choices become crystal clear. Your bullshit meter flips into high gear and you suddenly have permission to give zero f*cks about things that really don’t matter, and pour your energy and attention into the things that do. And, one of the most impactful things we can choose is our attitude.

I chose to look for the gift in my cancer diagnosis, and in the rest of my life, including my long-term illness. I chose to approach life with gratitude and appreciation, with joyful curiosity and humour. I started seeking, finding and living my silver linings.

Now those of us who approach life this way are often chastised for being “too positive” or Polyannas or even “toxically positive.” What I’m describing is not any of that.

This outlook on life — that there is a gift or opportunity in every situation, experience and circumstance — doesn’t downplay or ignore the shittiness of situations, experiences and circumstances. A critical first step is in noticing what is (good or bad), and acknowledging it, rather than ignoring it or rushing past it. Once we name what is and sit with it, then we can shift our perspective to find the gift, and from that, we get to choose to see life differently. Our attitudes shift as we literally rewire our brains.

I didn’t know how to explain this or describe this or back this up until this year. I knew I had found a way to lessen the mental and emotional impacts of managing a long-term illness, and that I had something that would help others, but I didn’t have the language to convey it.

Earlier this summer, I participated in the Positive Intelligence program for coaches. Finally, here was a plain-language, clear framework and a practical process, backed by research in neuroscience, psychology and performance science, to help people shift from negative thinking to positive thinking, in a way that lasts.

I’m so excited to have found this program. It feels like the key that is unlocking my ability to offer a real solution to people, like me, who are weighed down by the heavy pack of managing a chronic illness, on top of all the other stuff life piles on us (especially this year!).

So, I’m busy working to adapt the Positive Intelligence (TM) method, and all my other training, tools and insights from over the years, into a mental fitness program specifically for people managing long-term illnesses. If this is you or someone you know, I’d love your/their feedback on what your/their experience is like.

• You can respond to this short confidential survey that will help me fine-tune the program.

• If you’re interested in learning more about this program (which will launch in January 2021), you can let me know.

I know my life has changed dramatically in so many meaningful ways since I shifted my attitude and outlook, and I want that for you, too. You deserve to live fully and experience joy and happiness, and be able to bounce back from those “bad” days more easily, even if you’re living with a chronic condition. I would love to teach you how.