Living with a Chronic & Invisible Illness

Sometimes we feel totally alone in a world of healthy people. If we are isolated because we are so ill as to be house bound it is especially difficult. But even for those who are still working or active in other ways there is a sense of being set apart. Friends and coworkers may not understand what we are going through and we may be hesitant to tell them.

For many of us our condition is hidden so we are forced to explain when we aren't able to do something whether it can be an assignment at work or an outing with friends. We get varying reactions. In the cases of invisible chronic medical conditions people may think we are being hypochondriac. If your condition is life threatening some people are too uncomfortable to even talk with you while others are full of advice and quick fixes. We don't need to share our chronic condition with everyone. It's just not worth the awkward conversation that is usually too brief to help. But we do very much need supportive understanding from family and dear friends. These people who love us the most may seem like they don't fully comprehend our situation. Especially at first they are reluctant to believe we won't be well soon. Each time we have a remission they are sure that we are completely healthy again. It's up to us to explain again and again how we are feeling and what we are able to do.

Some of us worry that we are complaining too much so we minimize our symptoms. It's best to stay calm and tell it all as accurately as we can. In other cases those close to us become overly solicitous and we have to help them see that though we appreciate their caring, too much concern can hurt.

It is a blessing when those who are close to us understand our disability but that doesn't mean we dwell on our symptoms. Whenever possible we need to just enjoy other people and take pleasure in doing the things that we are able to do with them. Most of us will find our circle of acquaintances gradually becomes smaller because we haven't the energy to get out a lot. Even some good friends drift apart. It's hard for a high-energy person to stay connected with a friend who tires easily. Other friends become dearer than ever.

Our time and limited energy is precious to us and it helps to plan carefully how we want to use it. This may mean skipping that social get together Friday night or it may mean going but limiting our time there. Perhaps the occasion is so special that it's worth risking a set back in order to enjoy the full evening. Supportive friends are important to our well being when we are chronically ill. Finding the nurturing friends that we need is hard work when we are sick and feeling down.

We are worth the time and effort that takes!