Love, Understanding & Compassion Are A Two Way Street

As I sat down to write this post, I found that typing these words were not easy.  It was not easy because it’s always a difficult thing to realize, then admit (especially to the world) one’s own faults.  But here I am, once again, finding that the road to self-discovery with chronic illness has many bumps & detours along the way.   I am always talking about how we should not be ashamed of ME/CFS, Fibromyalgia, Interstitial Cystitis or whatever our invisible illness may be, & I found myself doing just the opposite yesterday.

I was supposed to work a four-hour shift last evening and I was too sick to go in.  I had been flaring all week and by Friday night, the flare had gotten really bad.  To top it off, I was sick on my stomach, I had a fever, and my sinuses are so bad right now my ears and head feel like they could explode at any moment.  Because all of these other problems are going on, my IC Disease is acting up so I’ve been dealing with those symptoms as well.  Friday night and yesterday were extremely overwhelming.  But normally, these other problems (the stomach and sinus problems), wouldn’t keep me from working.  The bad flare I was having, which was made worse by the other stuff, is what made it impossible for me to go into work.

When I called my employer to tell them I wouldn’t be in because I was sick, the manager asked, “What’s the problem?”  I found myself freezing in fear for a second.  I told him about everything that was wrong – except for the CFS, Fibromyalgia and IC flares all hitting me at once; and these were the main reasons I was calling off!  At the moment, I took the easy way out because I knew my explanation of the stomach bug and sinus infection he would understand and wouldn’t question.  A combo CFS, Fibro and IC flare – not so easy to explain.

Afterward, I felt like such a hypocrite.  I receive emails frequently from people who look up to me for what I’ve attempted to do for the CFS & Fibromyalgia community.  I feel like I’ve let everyone down, including myself, with my own cowardess.  My mission for the past five years has been to try and raise awareness and understanding for the chronically ill.  When I had the opportunity to do that very thing, I froze.  I feared the rejection or backlash, or possible negative reaction the chronic illness community has become accustomed to hearing.

The stigma that surrounds the words “CHRONIC FATIGUE SYNDROME” & “FIBROMYALGIA” have put a fear grip on all of us to where we are afraid to tell people what we have – and we shouldn’t be.  At some point we – myself included – have to take responsibility for our own actions and we have to find the strength to not fear telling others about our illnesses.

We have to let go of the past and the negative comments we’ve heard about ourselves, CFS & Fibromyalgia and forge ahead despite what others may think.  It’s like being 30 years old and blaming your parents for everything that is wrong in your life now – you can’t do that.  You have to take responsibility for the choices you make and move on.  As chronically ill patients, we need to do the same.  We can’t go back in time and right all of the wrongs.  We can’t erase all of the doctors, family & friends who didn’t believe that we are sick.  We can’t stop the Internet and Facebook bashing groups who mistreat us and defame us just because we have illnesses they are too ignorant to try and understand.

But what we can do is make a difference now.  I vow this will continue to be my mission and I will strive to do better daily.  We’re all a work in progress!  Remember this Valentine’s Day – if we want love, compassion and understanding from others, we must first show it to ourselves.

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  1. With several chronic diseases going on here, I can play “spin the wheel” and pick one to use should the need arise. I always go for the ones most folks will “get” and not wonder if I’m malingering. If I mention fibro it’s a wash – no one believes that. If I mention ehlers-danlos, most people (unless I’ve already explained to them) don’t have a clue. If I mention any one of three types of arthritis, oh yeah everyone gets that.

    My explanations are to simply say “you know how after you’ve worked out way too hard your muscles burn like fire?” Well gee that’s happened to everyone at some time or another. So I go on to explain that with me, every muscle in my body can feel that way for days on end. I blame it on the weather patterns too (which is entirely true). Again, everyone knows someone who suffers from “aches and pains” due to the weather.

    I try not to use medical jargon — I just say the joints are swollen and hurting today or my upper and lower back and ribs feel like I’ve been bulldozered by a mack truck. Or some such analogy that lets others know how I feel.

    Is it wimpy? I don’t know. But it works and I don’t have to go on with a bazillion explanations.

  2. I’m not convinced you have anything to feel guilty about. You had major flares and a flu-like thing going on, of course you were feeling overwhelmed! Sherlock had it right, I think. Why give complicated explanations when simple ones will do?

    I don’t think your flaring necessarily equates to a teaching moment for your supervisor. If you’re so inclined later, when you get back to work, and your supervisor seems receptive, then you can explain what other stuff you had going on with your flu.

    People who hold their livelihoods in their hands are not necessarily the ones you want to refine your activism with. You do a great job with this blog, and I, for one, feel that that is plenty.

    I hope you’re feeling better soon.

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