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 setback 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.