About Chronic Illness

When I got sick and didn’t recover, it was like entering a parallel universe that I didn’t know existed. One reason I wasn’t aware of this universe is that many chronic illnesses and conditions, even those that are live-threatening, are invisible. Many of us simply don’t look sick. I should qualify that. The people who are with us all the time know that we are sick – they see those subtle differences in our demeanor when our symptoms intensify.

What experiences do we have in common in our parallel universe? Lots. We often feel that it’s our fault we got sick – as if we’ve let our family and friends down. We know the challenges of adjusting to a life of relative social isolation. We know the experience of people not wanting to be near us, even though we’re not contagious. We get frustrated by the lack of understanding in the general public (and often the medical community) about the nature of chronic illness. We share that dilemma of how to “present” to the world: Do we spruce ourselves up to try to look our best (and risk people thinking we’re well enough to do anything), or do we let our physical demeanor reflect how sick we really are (and risk feeling guilty that we’re not doing enough to lift our spirits)?

I faced this last dilemma when I had the picture taken for the cover of my book (the same picture that's on the home page of this website). Should I put on make-up (which I hadn’t worn since getting sick) so I could look as snazzy as possible in the picture? Or, should I intentionally try to look sick? (In the end, I did neither.)

As I say in the book, sometimes being chronically ill feels like a full-time job. Before committing to even the simplest of activities, we have to pause and first weigh the plusses and minuses. This in itself can be an arduous mental task. How do we compare the plusses and minuses of going to lunch with a friend (where the minuses may include having to rest that afternoon) with those of attending the wedding of that same friend (where the minuses may include having to spend a week or two in bed recovering)? This constant need to scrutinize even the most mundane of activities can itself use up all our energy stores for the day!

Caregivers are faced with their own set of stressors. The possibilities include: the frustration of not being able to make their loved one better; being suddenly thrown into the role of patient advocate in the medical system; losing their partner out there in the world; having to take over most of the household tasks.

Being chronically ill and being a caretaker: both can be full-time jobs. Writing this book has helped me immeasurably because it’s taught me that no matter how sick I feel and how difficult my circumstances may be, with the right tools and the right guidance, I can find a measure of peace and even joy in this unlucky hand I’ve been dealt.