Book review: The Five Gifts of Illness

[bunrab]

The Five Gifts of Illness: A Reconsideration by Jill Sklar

Disclosure: I was one of the 100+ people interviewed by Sklar while she was writing this book. I am not directly quoted anywhere in there, though; I'm just part of her mass of data.

The main target for the book is people who have recently been diagnosed with a chronic and/or life-threatening illness. That "and/or" is a problem; it muddies the focus. Originally, the idea was how do people cope with serious chronic illness, but in the book as written, a lot of space is given over to cancer survivors, including those who are now cancer-free, as if the changes gone through by a person who has chemo and radiation for breast cancer, say, but then is CURED, are the same kinds of changes, especially permanent life changes, as those gone through by people who are diagnosed with a disease that can't be cured - diabetes, congestive heart failure, asthma. I don't think that it's true that the situations are the same, and I found the interviews with cancer survivors to be not pertinent to my decision-making.

That said, there is a lot of information in the book. Sklar compares the stages of accepting a chronic illness to the stages of grief (over someone's death), and that is a valuable comparison. Recognize that you are feeling grief over the loss of the future you thought you were going to have - no matter how long you live, whatever the prognosis for your chronic condition, it's still not the future you envisioned when you were a kid, or when you were graduating college. And one needs to go through those stages of grief before one can get around to seeing the silver lining - the "gifts" of illness.

Of course, the most obvious gift of any serious threat to one's life that one manages to live through is coming to the realization of "what's really important" - when you realize that you may not have all the time in the world to get done all the stuff you think you're "supposed to" do, you get the clarity to throw out some of the crap that you thought was obligatory. In a way, all the other gifts stem out of that one - the gift of choosing what's really important to you.

Perhaps the most important thing in the book, for the person who is reading it because they have just been diagnosed with a serious chronic illness, is what Sklar calls "The Big Question" - "if somehow you were offered the opportunity to go back in time to some point just before you felt your first symptom, and you were offered a choice to either go ahead the same way - the illness, and whatever wisdom and experience you gained from it - or to go forward without the illness, but also with none of the experience and wisdom that you gained from being ill, would you choose the same path?" She asked this question of the 102 people she interviewed. 87 of them said they would choose to have the illness - that the gifts of illness have been worth the suffering, that what they have gained by being forced to make hard decisions and choices is worth what it took to force them into those decisions. That should be highly encouraging to the recently-diagnosed, to hear that yes, live is worth living after illness, not only worth living, but possibly an improvement over whatever plans - or lack thereof! - that you had when you hadn't had to sit down and contemplate your mortality.

The end of the book is a list of internet resources for a lot of different chronic illnesses. Of course, a lot of them are for cancer - why do cancer survivors get all this attention, when, once they've survived, they often have no daily problems or reminders, compared to those of us who will have to continue taking pills, or breathing treatments, or injections, or special, limited diets, every single day of the rest of our lives? That's pretty much a regular gripe of mine. However, there are also resources listed for almost every chronic illness you can think of - AND, Sklar does put in a plea for more real-life support groups for chronic illness; she says there are all these support groups for cancer patients and survivors, and that there are far too few similar support groups for diseases that are far more common and that one may have to live with longer. There need to be more support groups and resources for all the "middle-aged" people who, 50 years ago, wouldn't have needed a support group because they wouldn't have survived, but now, if diagnosed with heart disease or diabetes at age 40 or 50, the same people can expect to live 30 years living WITH their disease and its treatment.

The book is available from on-line booksellers; you probably won't see it on the "health" shelves of your local branch of Giant Chain Bookstore - yet another sign that society is not paying enough attention to the growing population of people living with serious illness.