Living with a chronic illness changes everything. It changes the way that you approach your life, the way that you take care of yourself, the way that other people in your life adjust to what has altered. I know firsthand.
Joanna J. Charnas, a social worker who also has her own chronic health issues, has written a book that understands this from the inside out, a book that offers personal, practical, wide-reaching advice that can be helpful to the individual who has been diagnosed with a chronic illness but also to the caregivers and other family members who are equally affected by the changes. Disease doesn’t exist in a vacuum: it affects the whole system. Here, Charnas addresses that complexity.
Charnas shares a lot of herself with the reader. Right away, we learn about her chronic fatigue syndrome, which developed in her late teens but wasn’t diagnosed until seventeen years later. Anyone who has lived with a chronic illness, especially an “invisible” one, will be able to relate to Charnas’s frustration in trying to figure out what is wrong. But this book isn’t memoir. Charnas is a social worker who has worked professionally for years supporting people in their own self-care, personal growth, and advocacy. Her professional experience shines through, sprinkled with personal information that makes her relatable, believable, and trustworthy. You don’t feel like she’s trying to sell you something in this book, but that she’s truly interested in helping you if she can.
Charnas addresses emotions such as sadness, fear, blame, guilt, hope, and frustration, and what these look like in the context of chronic illness. By beginning the book this way, she’s giving you permission to feel your feelings — whatever they might be — and that’s something that people living with chronic illness have often not allowed themselves to do. It’s an important first step in the process of living well, and it may include grieving the loss of the life you’d planned to live before you became ill. I found it a thoughtful choice to begin the book this way.
From there Charnas talks about the importance of your own attitude in living well, and recommends different options for working with your attitude. She includes group therapy, CBT, positive cognitive restructuring and even tae kwan do as methods of healing that can help reframe your attitude. She doesn’t say anything along the lines of “put on a happy face,” but she does encourage the reader to take responsibility for trying to live well despite the illness.
This section did feel a little bit cheerleader-y, but there’s a time and place for this type of advice and it fits in well following the section on emotions.
Then comes an intriguing discussion of all the different decisions you’re required to make when you’re ill — about care, about relationships, about work, about everything. This is the kind of information that most doctors wouldn’t think to write about but that someone living on the inside of illness knows all too well.
Charnas provides only a short chapter on decisions, and on the feelings you may encounter when you think you’ve made a wrong one. Although a longer section on this would have been useful, I was heartened by the mere acknowledgment of the issue.
This section on making decisions segues nicely into the next part of the book, which provides some of the resources that you’ll need to assist in decision-making. Charnas suggests some places to find information; she also provides useful suggestions like taking in the information in bite-sized chunks so as not to get overwhelmed. (Reading every online article about your diagnosis on the day your diagnosed isn’t good for you!)
Self-care, though, is arguably the meat of the book. Charnas provides basic information about self-care, information that may seem obvious (sleep enough, eat well), but these concise reminders can be helpful. I live with a chronic illness myself — depression — and I continually have to remind myself to go back to the basics. It’s always useful to me to have lists like these handy, even if they’ve been featured in other books that I’ve read.
And Charnas does go a bit further than the most simple tips. She writes about organizing your life with preparation and contingency plans that account for the impact of your illness. One of the mental health tools I’m a fan of, the WRAP plan designed by Mary Ellen Copeland, taught me about the value of this type of self-care. Although Charnas doesn’t mention WRAP specifically, it seemed she’d been informed by this kind of psychological training.
And then, there’s relationships. Charnas’s advice is primarily for the individual living with chronic illness, about how to cope with the issues that may arise in families and friendships. This is empowering because it’s about how we can change ourselves (approaches, attitudes) to work within our families. However, this section is also useful for caregivers to read. It offers a better understanding of what’s going on for the person with chronic illness, and offers a balanced sense of compassion for the caregiver and other loved ones.
Charnas also balances the personal with the professional and the emotional with the practical, so it’s no surprise that following the emotional section on relationships, she moves into some succinct advice about legal and financial resources. The information she provides here is a little drier, but useful. It’s short, but points you in the direction of where to get started with self-advocacy and understanding your rights as a patient.
Finally, she ends the book with some thoughts on complementary treatment, holistic medicine, and spirituality. She doesn’t provide specific suggestions, but honors that a spiritual practice of any kind could be beneficial for readers. It’s an ending that reminds us that each individual’s journey is going to be unique, and that living with chronic illness is going to change from day to day. And it’s an ending that gives some hope.
This is a quick and easy read, one you can return to when you need a reminder. The book’s brevity might be exactly what you need when your brain already has information overload and needs simple and direct thoughts.
And although readers of other self-help texts on the topic won’t find anything innovative in the book, Charnas does provide a unique combination of advice from someone who is both patient and clinician.
There are many books that are written for individuals with chronic illness. And there are many books written for their caregivers and loved ones. Charnas tackles both sides, sharing insights on how the entire family can adjust to living well despite invasion by a chronic condition. It doesn’t matter what the condition is — mental illness, physical illness, or even long-term issues associated with aging; the advice here is applicable to any ongoing condition that makes life difficult, but not impossible, to live well.
Living Well with Chronic Illness
MSI Press, August 2015
Paperback, 152 pages