If I Knew Then, What I Know Now About Chronic Fatigue Syndrome

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I can still vividly recall the exact moment when I first heard the term Chronic Fatigue. It was throughout the period I was training to become a therapist and during one of our regular morning check ins, a member of the group suddenly announced that she had recently been diagnosed with the condition. B  was usually defined in our class as a bit of an attention seeker. Whenever the question ‘how are you’ arise, the usual response would be a quick summary before moving on to the next person. With B however, that simple question would be met with a rundown of her entire life’s history, at least that’s how it felt and so very soon, people stopped asking. B talked often about herself, usually to complain about how tired she was feeling. She would detail her aches and pains and bemoan the fact that she could only average a couple of hours sleep per night, But because she seemed so was perfectly turned out in the way she presented herself and because she was so effervescent and full of life, she was simply cast as being overly dramatic. There was nothing wrong with her as far as the group were concerned. How could there be? She didn’t look ill. She was simply tired. So what? Weren’t we all? So when she came into tutorials one day, her usual bright and cheerful demeanour extinguished and explained about her condition, everyone just rolled their eyes, myself included, and ignored her ‘ramblings’ about how exhausted she was. Even our tutors “hummed” in a kind of “yeah, whatever way and for the next two years, B never mentioned it again. Not once had anyone even thought to ask her exactly what chronic fatigue was.

On her wedding day, to which we were all invited, B was the life and soul of the party, and once back at college, she retained her usual cheery character. Now it’s only in hindsight that I can look back and wonder about the amount of energy it must have taken for her to get up each day and put on the mask of normalcy? How none of us could have possibly guessed just how exhausted she must have felt on her special day or the pain that she must have endured. And now that I think about it, and I mean really think about it, I now realise that all her talking wasn’t just ceaseless babble gained at seeking attention. It made sense that in a room full of soon to be therapists where the most personal of topics were openly discussed, that it would be the ideal outlet to vent one’s frustration. A safe place to express how she was feeling. After all, what better group of people could there be, who would be more empathetic to what she was going through? Sadly it seems, not us in our ignorance.

Today, whenever I talk to someone with a condition that I know nothing about, I ask them to explain. I don’t want to be that person that says “Hmm, I understand,” whilst all the while nodding my head even though I don’t have a clue what they’re talking about. It’s an unconscious form of dismissal and one that I’ve become accustomed to over the years.The way that I treated B, is now the way that others treat me. They will always ask “how are you?” And I will watch as they plant smiles upon their faces and their eyes slowly glaze over at my answer. If I could go back in time, I would humbly apologise to B. I would give her a gentle hug and and ask her to tell me about her illness. I would listen without judgement and although I may not have understood what she was going through, I would try my utmost to empathise with her situation.
I regret my ignorance that day and wish vehemently that I had been more supportive. In a world where Chronic Fatigue is still not seen as a viable illness by some, It’s hard to explain how taking a shower can wipe you out for the rest of the day, or that the more sleep you get, the more tired you become. It’s difficult to put into words the dread you feel at going out because you know that a simple task such as shopping, will bring on a flare and leave you feeling like a wreak for the rest of the week. Chronic Fatigue isn’t about being tired, it’s a feeling of being way past exhaustion, a feeling of depletion. The other day, my body decided to stage a coup as it held my bladder hostage. I urgently needed to go to the toilet and I did…3 hours later. My son asked slightly annoyed why I always waited until the last minute to use the bathroom and I tried to explain that just the thought of getting up to do so, left me bone-tired. I often think about B and how she’s coping. I just wish that I could talk to her and tell her that I understand and how truly sorry I am.

 

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9 thoughts on “If I Knew Then, What I Know Now About Chronic Fatigue Syndrome

  1. It’s often difficult for us to understand something unless we go through it ourselves or know someone going through it. Back then chronic fatigue syndrome was barely known and still today it gets little recognition. Lily, you have such a beautiful soul that here you are in terrible pain but still you’re thinking about the pain someone else was going through and wishing you could reach out to her today to let her know you now understand. By writing this post and with your FB pages, you have helped others have a better understanding. I had some understanding of CFS because I knew others who had it but I’ve learned so much more from you, so much more about the daily struggles and what it takes just to get through a day. That’s why my heart goes out to you and everyone suffering with this excruciatingly painful and too often invisible illness. And I hope that somehow transcendently your good thoughts reach B wherever she is. ❤

    Liked by 1 person

    • Thank you so much Madilyn! Your comment means a heck of a lot. I know most of the time I’m just whining, but if I can bring awareness to just one person, then I call that a success.
      It’s strange that millions of people suffer, yet still little is known about CFS. It’s usually classed as a side effect of another illness.
      I’ve been sending loving vibes across the ether to B, so I do hope that transcendentally, it reaches her. xxx

      Liked by 1 person

  2. I LOVE that you explain the pain and day to day challenges here on your blog. It’s not sugar coated, it is the raw truth and all in an effort to reach out to others to validate their pain and their challenges. You reach out to make them NOT feel less than and to let them know that they matter. Their pain matters. Their challenges matter. You assure them that it’s not all in their head. They’re not imagining any of it. It’s real. You are real and we are blessed to have you. Signed, one of “them.” ❤

    Liked by 1 person

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