Chronic Illness and the Family: Five Tips for Learning to Cope

A man in a wheel-chair smiles and enjoys a barbeque with his family.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.

People who live with chronic illness in themselves or a close loved one have to create their own way to manage, but 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.

  1. 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 gone through something similar is a great relief to many. Local, in-person support groups or electronic online discussion groups are a wonderful way to break that isolation, find help, advice, and new friends who can walk the new journey with you.
  2. 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 online, medical professionals, and research foundations may be the best places to start when researching a disease.
  3. 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.
  4. 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.
  5. 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.

© Copyright 2010 by Lynne Silva-Breen, MDiv, MA, LMFT, therapist in Burnsville, Minnesota. All Rights Reserved. Permission to publish granted to GoodTherapy.org.

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Lovedale

    November 29th, 2010 at 2:20 PM

    It can be devastating for any person to learn of a disorder because it is going to change the person’s life from that point inwards. But a lot also depends on the person’s mentality. If the person is overtly reaction he or she may even suffer a shock or a panic attack.

  • brian

    November 29th, 2010 at 7:06 PM

    I have a friend whose mom has a very aggressive cancer. They don’t hold out much hope for her surviving beyond 2010. This has all been very sudden. She found out in August and is only in her sixties. I don’t know whether it’s better to quit asking my friend about her mom all the time or to keep doing so. Am I causing more hurt by constantly reminding her she’s going to lose her soon? I’m also worried that she’s drinking too much to cover her hurt.

  • Karen

    November 29th, 2010 at 7:22 PM

    Awesome blog and this really hit home!!

    Having a son with an unknown, rare, motorneuropathy has been a journey. I think for the first two years of his disease, I was numb and just living day to day. He seemed, as a teenager/young adult, to be almost living in denial. As much as we asked him about counseling, he would refuse. Just this weekend, I read a paper he wrote about his disease for a graduate school application. I was deeply touched with how he could describe how his disease has affected him but hasn’t defined who he is. This will continue to be a journey we live.

    I have read two great books along the way. One by Richard Cohen “Strong at the Broken Places” and “Parenting Children with Health Issues” by Foster Cline and Lisa Greene. One thing that struck me in the latter book was how living with a chronic illness, you continue to go through the stages of grief every time you get a new update regarding the disease progression. This really helped to understand our feelings around doctor appointments.

    I have also learned, that there are many other families out there living with similar issues and it is comforting to talk to others who understand.

  • Dan

    November 29th, 2010 at 8:17 PM

    I agree with #2 in particular. We need to find reputable resources for information. How do you know where to look? I thought medical libraries for example were only accessible to medical professionals. Can the average person use and understand them?

  • Karen

    November 29th, 2010 at 9:14 PM

    Regarding #2 – I have read a LOT of medical journals to help understand my son’s disease. It took a little bit to understand the terms and what the articles meant, but I now know a lot. With this information, I have been able to ask more educated questions, understand test results, and the information the doctors had to share. There are many journals online where you can read the full article, otherwise our family doctor said that he would print out anything that we couldn’t access and could only find the abstract.

  • sandy

    November 30th, 2010 at 5:42 AM

    That list of resources is fabulous and really opens up doors for people who may have thought that there was no hope or even any help available beyond their immediate friends and families.

  • 5KP

    November 30th, 2010 at 8:22 AM

    although things like these do bring a family closer it is not something that anyone would want. but sharing your feelings with others who are going through something similar can be helpful. my little town in WV has a center for such parents.

  • colin

    November 30th, 2010 at 9:17 PM

    Lynne, thank you. Your article was very good and I’m grateful you didn’t keep this all to yourself.

  • Petra

    December 2nd, 2010 at 1:50 PM

    Spirituality has been a great comfort to me in the roughest times of my life. What does an atheist do when faced with such struggles? I would be terrified to think that when my body has stopped breathing, that’s me gone forever. I couldn’t get by without my belief in a Higher Power and that my spirit will go on.

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