What can I do about isolation?

First, accept the fact that some people can't handle being around people who are sick. You can't control them or what they do, but you can control your reactions. You can choose to obsess about these people or you can choose to put your limited energy somewhere more productive.

Second, be aware of what comes out of your mouth. What you say is a reflection of what you are thinking. Can you go through an hour with someone and not mention your condition? How about a day? Awareness of what you are doing is the first step to change.

Third, find a support group. Support groups and how to find them are dealt with in Question 93. Contacting a foundation that focuses on your disease is a good way to start.

Fourth, recognize that although chronic illness takes a toll on you, it also affects those who love you. Listen to your loved ones. Encourage them to share their own struggles with your disease. You are less alone than you imagine.

Finally, reach out to others. Write thoughtful letters, send cards, do little, unexpected nice things for people for no apparent reason. There are so many other people who are isolated just like you. "Reach out and touch someone" is more than an advertising slogan.

Why do I feel like a stranger to myself and others?

Chronic illness robs us of our identity, hopes, and dreams. Once the diagnosis is pronounced we will never be the same again. Susan Sontag, in her book Illness as Metaphor, writes that when we are diagnosed we become citizens of the land of the sick, only visiting the land of the well on a passport. We are foreigners in their world.

Once upon a time you identified yourself by your work, relationships, and hobbies; now you identify yourself as having "The Disease." The Disease is the last thing on your mind when you fall asleep and the first thing on your mind when you wake up in the morning. Your hopes and dreams for the future are dashed. Your identity is gone. Without that identity, you are a stranger to yourself and to the people with whom you

You are less alone than you imagine.

had relationships. You feel like a stranger because you have indeed become a stranger.

But the loss of identity gives us an opportunity to create a new identity, a new normal. Stripped of our identity as human "doings" we can learn to be human "beings."

Peter J.'s comment:

I just don't know how to make my family "get it." I give them books. I show them things on the Internet. I tell them how I feel. They don't seem to care. I asked my sister to go with me to my doctor's appointment. She sat in the waiting room. Maybe if she came in with me, she would realize what this disease does. I asked her to come to the support group with me. Maybe if she hears what all of us are going through, she will understand. I keep trying but nothing works. What can I do?

How can I make other people understand what I am going through?

There is a scene in the movie Gone with the Wind where Melanie is about to give birth just as the Yankee troops are attacking Atlanta. Scarlett O'Hara and Prissy, the young slave girl, are her only attendants. Prissy goes to get a knife to put under the bed because, "Mama says it cuts the pain in half." Wouldn't it be nice if that worked? When we are suffering the effects of chronic illness— pain, fatigue, fear, loss of control, anger, despair—we want to cut the physical and emotional pain in half. We think that if the people around us could just understand what we are going through, our suffering would somehow be reduced. Like the knife under the bed, it doesn't work.

While it may be comforting to have people empathize with you and stand by your side, ultimately each of us has to go through the experience alone inside ourselves.

This is a very difficult life lesson. It's a lesson I learned while delivering my first child. I read all the books, attended the childbirth classes with my husband, made sure my doctors knew what my wishes were, and even visited the maternity ward ahead of my due date. I had my coach and my team, and everything would be just fine. The labor was 22 very long hours! During that time I realized that no matter who was with me, the contractions were mine, and the pushing was mine. People could be around me to do their part and to remind me what my part was, but the experience was mine alone.

Each person's experience of chronic illness is unique to that person. And as in childbirth, we may have helpers, but ultimately we go through the experience alone inside ourselves. Patients in support groups frequently complain that their healthy partners and others, "Just don't get it. They don't understand." They don't. They really can't. They are not experiencing what the patient is experiencing. You can get so hung up on making others understand that they get tired of your explanations and endless description of symptoms. The Disease with a capital "D," and your efforts to make others understand, becomes your only topic for conversation. When that happens, not only do the others not understand, they don't even want to because you have been driving them crazy. You drive them away.

The central question here is why do you need them to understand? Once you realize that their understanding will not change your situation, you can stop focusing on them and turn your attention to your own self-management. Part of that self-management means asking for appropriate help and support when you need it but not expecting others to be able to walk in your shoes.

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