Words...

Living with a chronic physical illness can oftentimes feel lonely. People may feel not understood, misunderstood, or just isolated. These emotions can contribute to one's shutting down and not sharing one's inner experiences with others. It takes a lot of courage to reach out to another person or people, and to talk about the struggle of living with chronic illness. Speaking out can feel risky because how the other person will respond is unknown.

People really just want to be listened to most of the time when sharing feelings about living with chronic illness. Talking about experiences and knowing that someone else is with you, feeling with you, and helping you contain your emotions with you, is usually very helpful.  However, sometimes others feel the need to say something to you, to provide some advice, or feel compelled to try to "fix" what you are feeling. Words...its may seem like the best way to respond. Words...they may seem like the obvious solution to the "problem." Words....words can hurt and may even make some things feel worse. Words are powerful.

Sometimes people do not always know what to say and comments such as "it could be worse" or "you have no reason to be upset, just think positively" may come out in an effort to be helpful. In these situations, it is important to let the person know that such comments are not helpful and to try to explain why they are not. For example, "telling me that I should not feel a certain way just makes me feel worse because I feel what I feel right now, and you telling me that I shouldn't feel that way makes me not want to share any other feelings with you. It makes me feel really lonely." Sometimes all that people need is a little education. Unfortunately, some people just cannot understand no matter how hard you try to explain. Fortunately, one of the most helpful ways people can support you does not require that they use words at all. Being there for you means being with you. Being with includes just listening, holding you, showing you that you are not alone. These are some of the most beneficial requests you can make of your loved ones. They can sit there in silence and still provide you with a feeling of connection.

You may feel as if you have to keep your experiences to yourself if the words your loved ones use are words that hurt rather than help.  You don't. You can share and they can listen. If they are incapable of that then rather than shut down completely find someone else who is willing to do that. There are so many people in the world and they are so close, especially with internet access. There are support groups for people with almost all chronic illnesses and many have online forums if there isn't a chapter in your local area. Also you can speak to a professional who is trained to listen and respond appropriately with words and without words. Words are powerful but they are not everything.