Sunday, October 6, 2013

Coping with a chronic, invisible illness

I frequently read other fibromyalgia blogs and a recurring theme is the frustration that others don't understand this illness.  After all we don't look sick.  When I look in the mirror I see what others can't and I'm sure you do too.  And that's really okay, because do I really want to look sick?  I was talking to a friend of mine several days ago.  We had traveled up to Flagstaff together and the full day really exhausted me.  My friend stated that she was really tired after the day in Flagstaff and I attempted to explain how exhausted I was after the day, but that didn't turn out well.  She said to me, "Oh yeah.  Your tired is worse than my tired!"  I answered, "Yes it is."  She appeared to be completely annoyed with me.  I explained that people with fibromyalgia don't look sick and it's difficult for people that don't have this illness to understand the complete exhaustion we feel.  The reality is people that don't have fibromyalgia have no imagination for how ill we feel and how sick we are.  So once again I find myself resolving to never attempt to explain this to anyone that has not experienced this illness.  We are alone with this illness except for the support we give to each other and to ourselves.  We absolutely cannot count on our family and friends to understand this illness.  In fact, it turns them off.  After all, who wants to spend time with a sick person that incessantly complains they are sick?  Not very many people.

My strategy is to have a great deal of understanding for myself and my friends that suffer with a chronic, invisible illness.  The reality is if I want friends that are relatively healthy then I can't make a face and try to gain their sympathy.  I can't even try to gain their empathy; they aren't interested in giving me empathy.  My friends want to get together with me and have a good time and they don't want me to be a downer for them.  My husband doesn't want me to be a downer for him either and he's the closest person to me.  So, my resolve is to keep my misery to myself, but to care for myself every minute of every day.  That means when I'm unable to participate in an activity I just say "No".  I don't give a reason and I don't make excuses.  I just say "No thanks, but thanks for the invitation."  And when someone complains about how bad they feel or how tired they are I just snicker to myself and knowingly console them with the knowledge that they have no idea how tired and exhausted they could really be.

There is only so much we can do to educate those around us.  The reality is that if we persist in trying to get our friends, family and acquaintances to understand our illness the result is to just turn off everyone around us.  People in our culture like vibrant, young, articulate people.  I can't compete with that so instead I'm a good listener and people tend to appreciate that even more.  So I tell people that I have some deficits because I have fibromyalgia and then I let it go at that.  If they are really interested in me they will take the time and put forth the effort to find out what fibromyalgia is all about.  There is volumes of information available to people.  The truth is that the majority of people aren't really all that interested.  Since we cannot control those people around us we must just let it go and take care of ourselves.  I ask myself "How important are all those opinions anyway?"  Those opinions don't amount to a hill of beans.  There is only one opinion in the world that counts to me and that's my own opinion.  I frankly don't have the time or energy available to invest in someone else's ignorance.  So I happily go through my day and give myself the understanding I need about my ups and downs and I couldn't give a hoot about all those ignorant souls out there that just don't get it.  And it isn't a bad thing to put on a happy face, because we are just about as happy as we make up our minds to be regardless of our trials and tribulations.  Blessings to you as you go through each day with care and understanding for yourself!  Peace to you . . .

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