Tuesday, November 2, 2010

The Art of Pain

There is a certain aspect of chronic illness that "normals" can not possibly understand because, they are, well...normal.  It seems so long ago that I too was normal.  This was when I used to get my once a year bout with bronchitis.  Wow.  I thought that would kill me lol Boy if I only knew what was in store.

People are typically very pleasant upon seeing someone they know.  The first thing out of their mouth is usually "how are you".  How ARE you.  How are YOU.  Any way you emphasize it, this is a tricky response for a lot of us.  My best friend asked me this seemingly simple question not two days ago.  My reply? I am fabulous!  She said "really" haha.  YES really!

Here is my whack-a-doodle theory.  People ask the above question but only mean it half heartedly.  They really do not want the full spiel of how we are physically and mentally.  I feel chronic illness confuses people and leaves them without truly knowing what to say to us.  Depending on your particular illness, it can be VERY confusing.  I have CVID and now have developed a lung disease known as GLILD and am waiting to go to National Jewish Hospital in Colorado for a diagnosis and treatment plan.  My doctors here have NO idea what to do, have all told me such and so here I sit and wait and wait, not knowing if I am going to die, end up on oxygen or if irreparable damage is being done.  My friends do not know what to say except I am sorry.  If you truly love your friends and family, tell them you are fabulous and save the medical lessons for the very very important things.  If you love them, do not put them in an uncomfortable situation by giving them all of this stuff they cannot do a thing with.  They cannot help.  We do not have a right to make them feel helpless.  We know, they are there for us if we need them.  Join a support group, make some friends with chronic illness.  They will love to hear all the details as they are in this war with us.


  1. I agree with people asking "how are you" and that they really do not want to hear the nitty gritty details. If someone asks me I usually say "doing good or trying to make the most of it".

    Yes you are right that we shouldn't tell them about our chronic conditions because then they will try to give us solutions. We know that their solutions will most likely not work, we already tried them. So, to save stress from both parties, just say " I am good" when they ask how we are doing.

    Of course, we can give more in depth answers to those we pick and choose. We will know who to tell and who not to.

    I just looked up GLILD and I hope that the hospital in Colorado comes up with the best treatment plan for you. Wishing you relief!

  2. Thank you so much!! I cannot wait to go, its taking so long

  3. can't find a date when you go to hospital i have no family left(all have passed away) but when anyone i know asks how iam doin! i know they don't really want to know! i always say "Iam in the Middle" song by Jodi Messena they always look @me funny & OK! ya know i could better or i could be worse but iam in the middle doin alright! w/good friend here tonite let "US" know how you are doin!
    healing prayers & angels to continue to watch & guide you & yours

  4. Misunshine - I don't go until mid January blech. Thank you so much, I will keep everyone updated before I go. I don't have a laptop to take with me unfortunately so I won't be able to update while I'm gone but will as soon as I get back.

    I like your response to people as well :) (hugs)