As I seek to support of people with disabilities I began some time back to read the stories and articles posted in The Mighty, a major website that features articles and stories about and by people with chronic illnesses and disabilities. I strongly recommend it. In this website I recently found the following comment by Janelle F.
Janelle has seven chronic conditions
“I have seven chronic medical conditions and I liken it to having to try and juggle seven balls and keep them all in the air at the same time and it is exhausting. It takes up 90 percent of my thoughts, every damn day. But I can’t afford to let one ball drop, [because] as soon as one falls, the rest come tumbling down.” – Janelle F.
That comment really hit me hard. I started to reflect at once upon my own life and how blessed I —and my family— have been. Yes, we’ve struggled with illness. Yes, some of what we struggle with comes close to being chronic, but compared to the stories I read in The Mighty we have nothing, NOTHING, to complain about. And how little do we stop to consider what it is like for these folks. How little do we do to reach out to support and assist them.
We lack a common definition of the term chronic
Part of the problem lies in the fact that we do not share among us a common definition of what we mean by the term chronic.
According to Wikipedia a chronic condition is,
a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than three months. Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and viral diseases such as hepatitis C and HIV/AIDS.
The wrong definition can have devastating effects. The authors of this article struggle to find a common definition and finally encourage a simple, yet far reaching, one:
According to Merriam Webster, “chronic” is something that is “continuing or occurring again and again for a long time.” Using this simpler view, we would exclude something like a broken leg as a chronic condition, but would include reoccurring lower back pain, or hormone-related migraine headaches, for example. Diseases, conditions, and syndromes that do not make the top seven list, but when taken together affect a large number of individuals who can be quite costly to manage and are justifiably emotionally and physically taxing for patients and their caregivers. By reframing the conversation, we are not advocating for drawing attention away from heart disease, diabetes, arthritis, and COPD – the most commonly discussed chronic diseases – but we are in favor of bringing more diseases (and conditions) under the umbrella, with the hope of increasing awareness, sharing knowledge, and creating a larger community of individuals working toward improving the health of those who suffer from chronic health problems.
I believe that to be a valid and significant goal.
Note the reasoning:
- The simpler definition brings more diseases (and conditions) under the umbrella.
- This increases awareness
- Shares knowledge
- And creates “a larger community of individuals working toward improving the health of those who suffer from chronic health problems.”
Are you someone with a chronic illness or condition who has been overlooked or ignored? Or are you a caregiver of a family member or friend who with a condition not now considered to be chronic? The rest of us in the larger community, in our churches, our communities, in our government agencies need to open our eyes. We need to be ready to change our attitudes and our rules. We need to find new ways to reach out to you, to support you and to improve your health and the health of those you care for.
And we need to do it now!