Chargie Story: Emleigh’s Take on Chronic Pain

I am sick of being told ‘You Look Fine.’  So many people have been misinformed about chronic pain or just do not understand how chronic pain affects an individual.  So, I thought I’d give my take.

Do you remember the last time you had a cold or sickness bug?  How miserable you felt?  How sorry you felt for yourself?  Well, I’ve been sick for over a year and I work so, so hard on NOT being miserable that I’m exhausted all the time because of the pain I’m in.  EVERY DAY.  In fact, when friends or family come to visit, I really don’t seem to be the most fun to be around.  But, I am still ME.  I am just stuck in a painful body.

I have also learned that this illness is like a yo-yo.  Just because I could stand up for 30 minutes yesterday doesn’t mean I can do it again today.  This applies to walking, sitting, thinking, socializing, and concentrating too.  I never know from day-to-day how I will be when I wake up.  And some days, it’s minute to minute.  It’s difficult and extremely frustrating.

Some days, I might be able to go for a walk or on a date night.  This does not necessarily mean I am better because the other side of my illness means I may cancel plans at the last minute.  Please don’t take it personally.  Understand this is how my pain works.  And be grateful you can do all the physical things you can do.

So if you speak to me and I sound happy, it’s because I am happy.  That’s it.  It doesn’t mean I’m not in pain anymore or fighting extreme fatigue.  Please, don’t say ‘Oh, you seem better!’ or ‘You Look Fine.’  I am simply coping.  If we are out and I need to sit or lie down, it’s because I need to at that moment in time, not in 5 minutes or half an hour.  Chronic pain isn’t forgiving nor does it wait for anyone.  Getting out and doing things doesn’t always make me better; it can make me worse.  Sometimes, one single sociable activity causes such physical pain that it’s just not worth it.  If I seem irritable, I probably am.  I am still going through a lot and this type of pain is difficult to grasp unless you have felt it yourself.  It is exhausting to both body and mind.  I am trying my best to cope with this on a daily basis.  Nobody else knows how I feel, so telling me to ‘get fresh air’ or ‘do some exercise’ is unproductive and emotionally draining.  So, if you want to suggest a ‘cure’, please keep it to yourself.  Not because I don’t appreciate the thought or because I want to stay in pain forever.  That is simply not true.  Chances are, I have heard it or tried it already.  Sometimes, the suggested treatments have made me worse and again, it’s just not worth it.  Even exercise is not always the right thing for me.  If I were capable of doing things, I would!!!

But that’s when I might look to you.  Healthy you.  I still worry about work, my family, and my friends, and I still want to hear from you guys, too. You’re the link to the normal parts of life and can help me keep in touch with the parts I’m missing.   I fully plan on beginning to do those things again, once I can.

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