Rollercoaster Ride

Living with chronic illness is like a rollercoaster ride.  Not the small carnival coaster, but the big giant rollercoasters that create screams, tears, and vomit.  You never know what's up ahead around the next curve.  Will it take you up or down?  Will it slow or speed up?  Will it tilt side to side or make you feel like your about to fly out and die?  How long will it last?  Will it ever stop?

You approach the coaster with trepidation, not knowing what to expect.  You get off the coaster with the relief of being back on solid ground.  You may get sick to your stomach at the experience you just had.  Does that sound like fun?  Maybe it is in an amusement park.  It is not fun, when you live it every day.

What most people don't realize that there are many of us walking around, looking normal, doing normal things who live this way.  We are not disfigured.  We are not walking with a cane or walker, not riding in a wheelchair.  However, disabled we are.  But because we look like everyone else, it is assumed that we are not in pain, that we are not fatigued, that we are not battling depression, that we are not struggling with brain fog, that we are capable of everything a healthy person can do. We are judged when we don't do the things that others can do.  We are judged to be lazy, unmotivated, disorganized, even stupid or crazy.

Those of us that suffer from chronic fatigue, rheumatoid arthritis, fibromyalgia, and other autoimmune and systemic diseases have the same want to as anyone else.  They just can't always do.  They have dreams of doing new things and going to new places.  They just can't always fulfill those dreams.  They have needs of maintaining a healthy weight by exercising and eating right.  The just don't have the energy to exercise, dread having additional pain on top of their existing pain, and they eat comfort foods to sooth themselves in their depression over their illness.  They are then judged again for not being strong enough to overcome these things.

Those of us with these hidden illnesses grieve.  We grieve the person we used to be.  We grieve the effects it has on our lives.  We grieve the loss of respect from other people.  We grieve the impact it has on those around us.  We grieve the dreams for the future that are lost.  We grieve the life we hoped to have being able to travel, to be able to learn knew things, to be able to handle grand babies without fear.  We grieve being left out of things because people don't know if they can rely on us.  We grieve the lack of understanding and compassion from others.

We don't want pity.  We don't want you to feel sorry for us.  We want to be understood.  We want to be trusted when we explain ourselves to you.  We want to be loved and encouraged.  We want acceptance of this version of ourselves.  We want to do the best we can with what we have even though sometimes we can't.  We want to get off of the rollercoaster of pain and fatigue.  We want to be our "normal selves".  We can not be the old normal and have to accept our new normal as best we can.  It would be nice just to maintain a level track without the constant surprises around the bend.   It would be nice just to be back on level ground.