Tuesday, June 24, 2014

Why didn't you know?

Now that I have begun to talk to people about my mostly invisible illness, a frequent comment has been "I had no idea!" Some knew that I was frequently ill but were unaware of the full extent of my illness.  In reality, only two people in my life know the extent of my struggles on a daily basis and even they only know what I have been able to express and they have been able to observe.

I think that there are two distinct reasons for my silence up to this point.  One is external and one is internal.

The external factor is entirely associated with the spoken and unspoken word of others.  I found out quite quickly that when someone asks how you are, they really don't want to hear anything but good, great, or well.  If you ever say that you are not well, doing poorly, etc, you will at best receive a blank stare and an "I'm sorry to hear that" before the conversation is entirely over.  Do I really need to list the other comments I've gotten?  What would you say in response?

To avoid this whole scenario when asked how I am I say: "Fine," "Alright" or "Ok."  I can not bring myself to lie and say well, good or great.  The surface question is then answered and the conversation has the potential to move on, if I can talk around the big issue in my life.  I can't always do that.

I would love to say that the majority of the comments have been from those in the acquaintance group.  That, however, is very far from the truth.  I and others have been most wounded by those firmly in the friend category.  I have had very few positive responses when I have shared the depth of my invisible illness.  I do understand that if you have never been significantly ill you can not empathize, however, you can sympathize. Just acknowledging the severity of the illness goes a very long way.  Immediately changing the subject, questioning the honesty/mental health of the individual, or encouraging the person to be more positive is never helpful.  If you do acknowledge the illness and offer to help, please follow through.  May you occasionally have someone take advantage of you?  Perhaps.  Much more frequently you will be able to quite easily bless another person.

If you think that someone is not truthful about their condition, wallowing in self pity or taking advantage of someone else, PLEASE pray about it before talking to that person.  I have had this conversation with others several times, and only ONCE was the person spot on.  She spoke wisdom into my life and the Lord blessed it.  I have felt betrayed and devastated every other time.

Never encourage someone to not believe their spouse unless you have excellent evidence of untruthfulness. What could be more devastating to a chronically ill person than a spouse who no longer believes them?

Just as we have been told since we were children, the outward appearance is not reflective of the condition of the interior.  I have often longed to look as sick as I feel.  It has not happened often but I can honestly tell you that when I look as bad as I feel others are very supportive up until I look better again.

I think that there are VERY few hypochondriacs in this world.  Be careful whom you label that way.  Maybe something is always wrong because something IS always wrong.

I am not sharing my story to shame anyone but rather to provide a glimpse of how my invisible illness has impacted my life because I am confident that you know someone with an invisible illness.  Why not sit down with them and have a frank, open discussion.  Believe what they say and act upon it.

The other reason that I have been silent is entirely my fault.  I am very much a pick yourself up and carry on type of person.  The constant push to keep going has in many ways even hid this illness from myself.  I do what I need to do to make it through the day.  I have done that for just about twenty continuous years without really take a reflective look at the emotional and spiritual aspects of being chronically ill.  Dreams have crashed and burned and I've never stuck around long enough to witness the fire.  I am starting to be prompted to change that.  Being open and honest with myself necessitates sharing with you.

I am working on the internal reason for my silence.  Will you work on the external?