eleven. Looking Ahead

Where can I find a support network?

Support networks aren't found; they are created. You are the person who creates that network for yourself. When you have chronic illness, the tendency is to rely very heavily on those people closest to you—a partner, parent, child, sibling, best friend, or close neighbor. Remember that just as you are struggling with losses and changes in your life, your disease is causing losses and struggles in your friends' and families' lives, too. Does this mean you can't turn to them for support and help? Of course not! These people care about you, and they want to support you. But if you rely on one or two people to be your entire support network, sooner or later they are going to burn out. As many as 75% of marriages in which one partner develops a chronic illness or disability end in divorce.

Think about the types of support that you need. Be realistic about these things. Do you really need help? Is there some way you could modify an activity so that you could do it yourself? You may think you need help cooking, when what you really need is help chopping. Do you need help with activities of daily living? Shopping? Cooking? House cleaning? Driving? Do you need someone who you can talk to about your chronic illness experiences and frustrations? What else do you need? Now make a list of people who have offered to "be there for you." Next to each person's name write the way in which they can help you. Become aware of how often you have been turning to the same people. Spread your requests around. If you can't find people to support you, cast your net wider. Call a local church, synagogue, or mosque. Adults and teens are often available to help people who need it. Are there things that you could hire people to do? Maybe you can handle light housecleaning, but having a service come in once a month to do a more thorough cleaning would really help you.

For emotional support in coping with chronic illness you may have to look outside your usual resources. It can be very helpful to see a psychologist or social worker who has some experience with patients who have chronic conditions. Mental health professionals who work with oncology (cancer treatment) practices often have a very good understanding of the emotional and social problems that plague people with chronic conditions. It's not reasonable to expect your loved ones to fill this role. They are facing their own challenges in coping with your condition. Do talk to them, but also be willing to listen to how they are affected. You might both benefit by seeing the mental health professional together!

Where can I find a good support group?

The first step is to find a group, and the second is to figure out if it is a good group for you. You can find support groups by contacting the foundation that specializes in your particular disease. There is a foundation for almost every disease you can imagine. Many of them have support groups. Call your local hospital. Ask your doctor. Some psychologists offer groups. Check the health, club, or meeting information in your local newspaper's community calendar.

Before you can figure out whether or not a group is good for you, it is important to think about what you hope to gain from the group. Some people approach support groups thinking that they are like twelve-step groups. They think that they will be able to call other members of the group at any hour if they are feeling sad or frustrated. People in these groups are suffering with the same things as you. They are not likely to welcome a call at 3:00 a.m. because you are in pain, sad, or afraid. Others see support groups as a place to regurgitate their symptoms and problems. Doctors often hesitate to recommend groups because they perceive them as nothing more than suffering olympics and pity parties. This kind of group only makes people feel worse. Doctor-bashing is very common in these kinds of groups.

The best groups are those that do their best to remain positive. People are encouraged to share their experiences with the difficulties of illness, but not week after week after week! Once is enough. Good groups are places where other people with the same set of problems share solutions and coping strategies. Good groups are sources of reliable information. You will have to visit a group to truly get a sense of what goes on there. You might have to try more than one, but keep at it. If you walk out feeling worse than when you came in, the group is probably not for you. If you walk out feeling less alone, like there are other people who understand, and with information about how you can live more fully with your condition, then you have found a good group! And what if there are no groups or no positive groups where you live? Start one! There are other people just like you who wish there was such a group, and everyone is waiting for someone else to get it going.