Tuesday, May 12, 2015

Fibromyalgia Awareness Day 2015

Today, May 12th, marks Fibromyalgia Awareness Day.  It's now been three years since I was officially diagnosed with this condition.  While I could spend a lengthy post describing exactly what it is and what doctors think about it, I don't think it's the most effective way to raise awareness.  Frankly, nobody knows for sure: 

  1. What causes it (though everybody has their own opinions) 
  2. How to cure it (again with the opinions)
  3. How to definitively prove who has it and who is actually misdiagnosed
  4. A single treatment that works well for everybody

So, instead, let me just take this opportunity to briefly put you, the reader, into the mindset of a "typical" Fibromyalgia patient after diagnosis...

You probably used to be a very driven person (most fibro patients were and still try to be) before getting sick.  You may have worked a full-time job, taken care of your family, taken online classes, and been heavily involved in your church or a community outreach program.  Your mind still jumps back to those days of sprinting from beginning to end sometimes, forgetting the new normal.  You might still try to get it all done, only to get halfway through the first task on your list and collapse exhausted onto the couch.

Your mind will probably start getting confused at times, leaving you wondering why you're at the store or what you were just discussing.  You might forget really important details or basic information like your husband's phone number.  It will be frustrating as you have the same mental fog and confusion as your 80 year-old grandmother, only you're in your early 30's usually.  But the worst part of this confusion will be when you seem completely aware of your surroundings, but you are unable to communicate clearly, leaving you feeling isolated, frustrated, and afraid.

Your body will slow down, even though your mind probably won't realize how much.  You won't understand why it suddenly takes you 30 minutes to just put clothes on or why you are tired no matter how long you sleep at night.  It won't make sense that you look so young and feel so old.

You will probably start to face some level of mental anxiety and possibly some depression.  Facing each morning with having to fight to make yourself get out of bed, and knowing it is likely just going to get worse as you get older, feeling completely out of control of your body and betrayed by your body that should be healthy but feels so sick--these are reasons that after extended periods of time can make people feel anxious about everything, and when this culminates in realized powerlessness to "fix it" it can lead to fighting with depression.

Aside from the fatigue, headaches, chronic pain, anxiety, depression, and mental fog, you probably won't hear much about the emotional side effects that are also likely to crop up eventually.  But if you follow through with this train of thought, it's not that far of a stretch.

If you take a very driven person (who may also attach some or all of their significance to their work or their relationships) and gradually, inexplicably drain away the strength and energy they need to do the work or maintain those relationships, it is likely to have an emotional effect on that person.  Not only is that strength gone, but it is often gone without a socially acceptable explanation.  If this same person had been diagnosed with cancer, some of the effect would be the same, but the people around them are more likely to have context for the situation.  

This process often leads to a grieving process.  You will grieve for the pieces of your life that disappeared while you were in a fog trying to find your keys that fourth time the same morning.  You will grieve for the life you expected but were not designed for.  That's part of learning to accept what God has given you.  It's ok to grieve.  You will grieve that people don't understand you and sometimes just think you're lazy or too sensitive.  You will grieve lost relationships when you don't have the energy to maintain them or others pull away because you are too complicated.  

So, what is it like to have Fibromyalgia?  You have the fatigue, the chronic pain, the headaches, the anxiety, even depression, and yes, grief.  You will have lost friendships, and you will find things that have be let go in order to hold on to what really matters.  But I don't write this to ask for sympathy or bemoan how hard life is for someone with Fibromyalgia, because as a follower of Christ this is just a part of a bigger reality.  To me, this is just one more big, recurring reminder that I, like everyone else, live under a very real curse of sin that has been corroding the fabric of creation from the Fall.

So, if not sympathy, then what?  Why bother with raising awareness at all?  As with everyone in the Body of Christ, those believers with fibro need empathy and compassion and true fellowship in the Gospel.  We are never going to be what we were before this unknown beast (yes, that's what I call it) started attacking our bodies, minds, spirits, and very souls, but we are fighting our fight everyday on fronts we try not to advertise to everyone around us.  We don't want to be written off as lazy or pathetic or attention-seeking drama queens.  We are asking, no, begging, for the Body of Christ to function as it was intended--as a family, to lovingly surround us and embrace us with warm, loving arms in grace and mercy.  To weep with us when we weep and laugh with us when we laugh, because I guarantee we do both frequently behind closed doors.  Let's break down the barriers, and start reaching out in love and understanding to the weakest among us, instead of waiting for them to be strong enough to earn their spot back among the toughest.

grace & peace,