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It's only diabetes.
Scott E.'s blog post reminds us, as people surrounding the newly-diagnosed, that our attitudes towards both the person and his care regimen can have serious repercussions on that person's ability to accept his diagnosis and care for himself. This is especially true where impressionable children are concerned. He mentions a particular type of parental reaction, the "omigod-my-precious-Cameron's-world-is-coming-to-an-end" reaction, where "Cameron" is the fictitious name of the newly-diagnosed child.
"It's only diabetes."
I'm of two minds surrounding this statement — and I suspect that everyone living well after diagnosis, regardless of type or origin or treatment, is the same way.
A diabetes diagnosis means that there is a name for what we have (albeit a very general one, especially where "type 2" is concerned), and treatment plans that, while often time-consuming and somewhat painful, work, for the most part. We may never be cured of our metabolic disorders and autoimmune conditions, but our treatment doesn't significantly diminish our life expectancy nor our quality of life.
Compare this to the person diagnosed with middle- to late-stage cancer, who faces significantly more invasive and painful treatments, with a significant reduction in life expectancy, and the expectation of later recurrence, and of unrelenting, excruciating pain towards the end of its final run.
Compare this to the child diagnosed with muscular dystrophy, whose ability to move and to care for himself diminishes over the course of his life, and the real expectation that he (or she) will not live long enough to sire (or bear) children of his/her own.
And compare this to people who live in constant pain and reduced quality of life because of disorders that defy diagnosis, either because their healthcare team is unfamiliar with the "rare disease" causing their suffering, or because the underlying condition has not yet been catalogued by medical science, or because — even if the condition is known, there is neither treatment nor cure.
That's the optimist's mind. The positive mindset. The worldview each of us must take each and every day to live, and live well, with diabetes.
But then there's the flip side of the coin.
The ongoing cost of care, in both time and money, removes from us a lot of the spontaneity that most people associate with a good life. We cannot eat what we want, when we want, all the time, because of highs, lows, running out of insulin or test strips or oral medications whilst away from home (or because we have low-paying jobs and crappy, or no, medical insurance), not being able to go out to eat with friends because most restaurants do not have menus that are conducive to healthy eating with diabetes (especially diet-controlled type 2 diabetes, which often includes additional restrictions to treat frequent co-conspirators hypertension and high cholesterol), or because we're out of money after paying for the test strips and insulin pumps and CGMs which we need, but which our insurance considers unnecessary or for which our co-payments are exorbitant.
Compared to an equivalent family without diabetes (or any other chronic medical condition), we have less disposable time and less disposable income; we must plan our outings (and our children's schooling and leisure) more carefully, and our choice of where to live and work is often constrained by our need for appropriate nearby healthcare practitioners and effective health insurance. We often have to rearrange an entire family's food to make sure there is always sufficient and appropriate food for the person living with diabetes — which is even more important when the PWD is a child and we don't want that child to feel "left out" from one or more courses of the family's dinner, or celebrations, or anything else that is part of a healthy family life, or when that child is also diagnosed with (or is suspected to have) the frequent co-conspirator, celiac disease.
This is what "Cameron's" family sees.
This is why we, as people living with diabetes and as people active in one or more vibrant, supportive communities of people with-or-without diabetes, need to reach out to those families, embrace them, and share our hope and our strength with them.
No, it's not always rainbows and unicorns — but it's not horror flicks and the Grim Reaper, either. It's just... diabetes.
Megan was diagnosed in 2009 with Type I. As an RN, she was familiar with the medical side of her diagnosis; learning to be a good patient on the other hand, was and continues to be the challenge of her day to day life. (Read More)