It may be the idealized image of television shows, or perfect, ever-present pictures in advertising in newspapers and magazines, or just the plan hopefulness with which we all start our families. But most of us don’t plan to include chronic, life-long health problems in our family plan.
Our bodies are quite amazing creations, able to fight off disease, recover from injury, grow, age and change every day. We aren’t minds that have bodies attached, but we are instead bodies that think. We must eat, move, think, rest, work and love with our physical selves in mind. And for the most part, this natural rhythm of self-care makes life work.
But life isn’t smooth, and our physical systems aren’t perfect. Some of us will encounter injury, disease or disability that does not respond to time and care. For many of us, that process comes quite late in life, after the children are grown and gone, and our work life blessedly finished. But for others, this physical change comes much earlier, as a child, or teen, a young or middle adult. And suddenly life is different.
Chronic illness. It’s a disease, like diabetes, that robs the body of its natural resources and requires hourly attention to diet, activity and insulin. It’s asthma that can be quiet for days and weeks and suddenly constrict airways. Spina bifida, cerebral palsy, brain disorders, arthritis, paralysis, cancer, and blindness: the list of disorders, diseases or injuries that can change our lives is seemingly endless. None comes with our permission. But once it comes, if we want to keep our families and marriages healthy, happy, and productive, we must figure out how best to cope.
While those who live with chronic illness in themselves or close loved one have to create their own way to manage, there are some common factors when people find themselves faced with permanent life challenges. Perhaps one or more of these resources may fit you and your family now or in the future.
- Support. Being suddenly faced with disease or disability can be an enormously isolating experience; we feel overwhelmingly alone in our loss. Reaching out to others who have been there before us is a great relief to many. Local, in-person support groups or electronic on-line discussion groups are a wonderful way to break that isolation, find help, advice, and new friends who can walk the new journey with you.
- Education. Many of us have found the Internet and it’s endless resources both wonderful and awful: some of what we find is inaccurate and it’s hard to sort out which information is true or not. Finding the most authoritative sources of information about our condition is important and life giving. Medical libraries on-line, medical professionals, and research foundations may be the best places to start when researching a disease.
- Insurance companies. Believe it or not, most health insurance companies want to help you manage your disease so that you maintain or improve your symptoms. Many diseases have been shortened, improved or cured by the research done in clinical trials. Ask your physician if you qualify for research studies, and then be in touch with your insurance provider. You may find, as I have, that your insurance will cover an important, life-giving clinical study.
- Mental health care. As a psychotherapist who has been a therapy patient herself, I know how critical mental health care is to living with disease and chronic pain or disability. Reach out for mental and emotional support before you feel overwhelmed, and find a private, confidential healing place to think about your feelings, behaviors, relationships, and changed body. Internet directories like GoodTherapy.org are great places to search for quality therapists in your area.
- Spirituality. Nothing is more important to the long-term adjustment to change and disability than working within one’s sense of faith, belief, ritual and higher power. Faith and spirit can help one recreate a sense of purpose, meaning, self-care, self-acceptance, love and forgiveness in the midst of loss and change. When we can feel connected to a Being or community that loves us in the midst of our personal storms, we can experience a safe harbor for our hearts and minds.
Even with some or all of these important resources, living with chronic disease is a difficult and exhausting journey. Be sure you make time and space in your life for love, laughter, and joy, the things that hold families together. Despite the challenges, you may find life really worth living, together.