“Living successfully with chronic illness takes patience, humor, knowledge, support and time.” I could have written those words but they are not my words. These words are written by Susan Milstey Wells who is a chronic illness sufferer as am I and as are the readers of my blog. We are special group of people united by the crippling effects our diseases and the ability to learn strength and endurance in the most unique way possible. In her book, A Delicate Balance: Living Successfully With Chronic Illness, Susan writes, “Chronic illness doesn’t come with an instruction manual,” and as we all know, it is something we learn over time. Susan’s book is not a self-help manual nor is a book how to live with chronic illness. It is about the experiences of people just like you and me trying to finding answers and a balance between a normal life and a life with chronic illness.
When a person is diagnosed, he or she begins a new and long journey towards finding a balance between acceptance, understanding and healing, as Wells tells us her book. Wells takes the book in the same direction of her own journey and the same direction that many of us have traveled in order to make sense of our new lives with chronic illness. The first three chapters of Susan’s book deal with the psychological and emotional aspects of getting a diagnosis and then figuring out what the next steps are once you have received a diagnosis. In the middle part of the book, she goes into detail on looking into treatment options, finding medical providers to help us through the maze of questions and confusion, and the effect that chronic illness and the all the aspects of treatment and education have on the personal relationships in our lives. In the last chapter of the book, Susan offers an optimistic view to her reader on looking at chronic illness as an unwanted gift, but nevertheless, a gift that teaches us the kind of people we are capable of being through the lessons that life throws at us.
Chronic illness is never smooth sailing and from my own experience, I have learned, like anything else, it comes down to what you make of it. Susan takes the topic in a positive light that teaches how to find that balance and how to make it work for us. The unique thing is that her advice isn’t expert, it comes personal experience, hers and many others who contributed their time to speak about the effect that chronic illness has on their lives. It is a powerful message that you can use not just for living with chronic illness but also for living with other challenges. That message does not come from Susan alone. It comes from people like Ken Henderson, who is a married father of two with fibromyalgia who had a difficult time getting a diagnosis, and in the process lost a healthy gallbladder, was sent to a psychiatric hospital, lost his job for taking too much time off work, and had to cash out his retirement savings. If he knew what he knows now, he would have spent more time trying to be healthy, rather than finding a diagnosis. Or Ellen, a 49 year single woman with interstitial cystitis and lupus who while searching for her diagnosis agreed to have a hysterectomy even though she had no children. Her health forced her to retire from teaching after 28 years. Today, she runs a local interstitial cystitis support group and writes education plays for children. It is also about Sally who has chronic fatigue syndrome, age 31, married and unable to have children because she feels like she is not well enough. She started having symptoms as a teenager but only received her diagnosis at age 23. She has a doctorate in clinical psychology but because of her illness, she is unable to work. There are many more Kens, Ellens and Sallys out there living with chronic illness and struggling everyday to be stronger and to find a unique balance between normal and living with chronic illness.
One of my favorite quotes from Susan’s book is “for those of us who are ill, chronic illness sets us apart. But when we read about the experiences of others, we realize we are not alone and that healing is available to all of us, regardless of our disease.” (You can find this quote right at the beginning of her book at page 3.) This is the first message that Susan delivers and sets the tone for the entire book – you are not alone because there are so many people are there just like you. I find this to be similar to being part of private sorority or fraternity; you are a member for life and no one understands you like your sorority sisters or frat brothers. The age of the internet, blogging, and online support groups has allowed us an opportunity that other chronic illness sufferers before us did not have. We have the ability to reach out and feel less alone and that is so very important for sufferers to understand that they “are not alone and that healing is available.”
One of my favorite chapters was titled “From Denial to Acceptance and Back Again,” because it illustrates how healing actually works. We grieve, then move on, and then we go back to grieving. This is just part of being chronically ill and to know that others can relate to you makes all the difference in the world. This is also a good thing because it teaches how handle challenges in living with chronic illnesses. We learn to accommodate our diseases in order to live our lives and to find that “delicate balance” that Susan’s book is all about.
When I found most interesting about Susan’s book is how relatable it is. The questions that I ask and blog about and that you question and blog about were right here in Susan’s book from chronic illness being lonely to it being a family affair to whether you can continue to work or how you fear asking a for an accommodation. In a way, it is a resource manual for living but what is unique is that it comes of those who have experienced a life with chronic illness and their experiences are examples of how we can find balance in our own lives.
You can purchase A Delicate Balance: Living Successfully With Chronic Illness through Amazon.
For more information on Susan, visit her website.
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