Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Relationships

This Didn’t Just Happen to You!

It’s easy to believe that the news the doctor gives you puts a crimp in your style and your life and only your life.  Let’s be serious, you don’t live alone on a mountain, in the middle of the rain forest.  You live in society, maybe with other people (your family), or at least you interact with people on a regular basis.  You don’t live in a vacuum and the diagnosis doesn’t only effect you.  It impacts everyone’s life from the moment the diagnosis is received.

Those who love you may not harbor the physical manifestations of the diagnosis, but they certainly exhibit the impact of the emotional and spiritual aspects.  They can’t help but be impacted by the news because they’re human and they have the capacity for empathy and compassion.  Some of you facing a health challenge believe this is your fight and yours alone, keeping your illness life secretive.  You hide the anxiety and stress affiliated with the diagnosis, the symptoms, and the side-effects.  At least you think you’re hiding all these experience; you’re actually not that good of an actor and everyone who has been around you for a period of time can read you like a book.  Hiding your experience means they have to deny the reality causing them stress and if it persists long enough they’ll begin manifesting stress symptoms.

Include your support network in your life.  Keep people in your family up-to-date on changes, good and bad, in your health.  You don’t have to call everyone as things change you can come up with creative ways of keeping people in the loop.  Technology has allowed us to stay connected without having to pick up the phone.  Blast e-mails allow you to send one e-mail and everyone is in-the-know.  Others have found that creating a private blog gives them the opportunity to express themselves in private and without explanation or a question and answer session.

It’s important to your health that you resist isolation…isolation is a health hazard.  Keeping those who love you at a distance denies the reality of your relationship.  When you negate these relationships it means that people become less available when you may need them the most.  Give yourself every opportunity to thrive; keep those who love you in the loop…it’s a live saver!

Posted in after the diagnosis, Community, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Relationships

Long Days and Longer Nights

One of the biggest challenges for those facing an illness either on the patient side or the caregiver side are the feelings of isolation.  It’s difficult when most of your contacts, friends and family, have had no or very little experience with illness.  You look for a sympathetic ear and although they mean well you probably know the blank stares that come your way.

During the day it’s easy to create diversions because there is so much to do.  It’s once the sun goes down and the world gets smaller that the sense of isolation increases.  For the patient and caregiver, trying to support one another isn’t helpful because you’re both fighting the same demon.  You try and remember what it was like prior to the illness and although your activities may not have been any different, like sitting in front the of the television, the implications of your new circumstance ring loud like bells in church steeples.

It’s important that you each set up some type of communication plan.  Care groups form to help ease the experience by cooking meals, driving the patient to an appointment or by picking up the phone and making human contact.  I know that sleep patterns are often not usual so what do you do when it’s the middle of the night, you look out your window and every light on your block is out.  Remember that with technology there is always a part of the world that is awake.  Illness and caregiving is a universal experience.  There are both those who can’t sleep who you can communicate with online and those halfway around the world who are dealing with the day-to-day challenges of facing illness.

Don’t let isolation get the best of you.  Come up with solutions to create a strong community and make sure that you utilize the resources that are provided to you (both of you).  What do you do to tackle those sleepless nights?  Let’s share so that we make the world less of a lonely place.

Posted in after the diagnosis, Community, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

How do I fit in?

There are lots of ways of creating community.  We see groups of people connect all the time and now with the Internet getting the word out there can be quick and painless.  If you see sites like Meet Up,, you not only can find people with similar interests, political views, life challenges, but you can find them in using your zip code as the search parameter.

Now it’s clear that just because a group exists doesn’t make you a part of it.  The important part about becoming part of a community is that you have to show up.  You have to show up in the physical sense, but you have to also show up emotionally and be ready to become a part of something larger than yourself.  I know that at the beginning the desire to hang back is tempting, but you’ll get more bang for your buck if you jump in the fire.

Feeling a part of something will reduce your feelings of isolation and what the 12 step programs call “terminal uniqueness”.  That’s where you believe there is not one other person in the world who can understand your life or its challenges.  When you become a part of a larger entity you find that being one of the school of fish makes swimming upstream easier and more fun.

Stop walking around the edge of the pool…jump in and see who else is waiting to welcome you!