Ten More Rules for Living with Chronic Illness



Last month Deb, who lives with neurocardiogenic
syncope, wrote to me:

I just read your interview on beliefnet.com, "5 Rules for Living with Chronic
Illness & Depression."
  Your advice was right on point – I wish
I had had it eight years ago!

…Anyway, you said you wanted to offer your readers guidance to
living with chronic illness.  I've come up with a couple of "rules"
that help me stay on track – you probably already know them, but I'll
offer them anyway:

  1. Try to get up at the same time every day.  It's not always
    possible.  Heck, it's not always possible to get out of bed! 
    But try.
  2. Shower, get dressed (sweatpants aren't allowed), brush your
    teeth and put on a little make-up.  The simple act of trying to
    LOOK human often almost makes me FEEL human.
  3. Don't play too many computer games.  It's tempting to spend hours
    on the computer because there's not a lot else going on.  But I've
    found that my sleep rhythms get messed up from too much computer time -
    and my sleep rhythms are ALREADY a problem!
  4. If you can, take 15 minutes and straighten up your house.  I know
    that some days it's just not going to happen, but somehow I always
    feel physically better if the clutter is gone.
  5. If possible, get a pet. My dog and my cats always know when I don't
    feel good and will come and sit with me and give me comfort.
  6. Accept help.  Probably one of the hardest things for people to do
    is accept help.  Needing help is not a weakness.  Not being able
    to accept help is.
  7. Listen to the people around you.  My family and friends almost
    always know I'm going to have a spell even before I do.  Don't be
    stubborn.  Pay attention to them.
  8. Understand that chronic discomfort makes people cranky - it's a fact
    and you can't do much about it. What you can do is try to recognize when
    you've jumped the shark, apologize profusely, and then start over.
  9. Cut yourself some slack.  Nobody can do it all – even if they're
    100% healthy.
  10. Try to live and give each day for God.  I've always tried to do
    that and when I had to slow down I felt I was letting God down because I
    just wasn't "doing!"  What I understand now is that I'm still "doing"
    just in a different way – I listen a lot more.  I'm more
    empathetic.  I'm always here for my friends and family because, well,
    I'm always HERE.

Deb's rules are right on! I love every single one of them. Do you have any rules of your own that help you live a full life despite illness? Please share them with us in the comments below!

One comment


  • Mariah

    Rule 11.
    Think about your partner and how to operationalize your love for them. Just saying “I love you” doesn’t cut it.
    Rule 12.
    “Thank you” is your most important sentence. People are going out of their way for you all the time. You can’t acknowledge it too much.
    Rule 13.
    In a relationship, think outside the box. The way a relationship is structured where one partner is ill and the other is well is not normative, so you need to find your own new normative.
    Rule 14.
    In a relationship it is crucial that you see an actual health psychologist, and particularly a couple’s therapist with a background in health psychology and hopefully also sexology.
    Rule 15.
    Illness makes you narcissistic as a matter of course and a matter of necessity. Fight that narcissism with everything you’ve got.

    2010/08/28

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