Kidnapped by Myalgic Encephalomyelitis a.k.a Chronic Fatigue Syndrome
Not all we need to hear has to be inspirational and positively framed. Sometimes we just need to connect with someone who is feeling as hopeless as we are. And other times we simply need to put on our empathy hats, take off the judgment, and listen.
The narrative below is a touching first-hand account of what being diagnosed with a disorder feels like. In this case, this disorder is not a mental one, although it affects the psyche as well. The woman below (who also happens to be my sister) is stuck in a dark home writing this heartfelt piece on how living with Chronic Fatigue Syndrome has affected everything about her life.
She is exhausted, ALL of the time. But as a young mother of two and wife, she is not allowed to be tired. This “thing”, or her syndrome, has “kidnapped” her every bit of energy to keep motivated and driven. In a way, this is what depression feels like physically – it drains us. But Jasmin is not feeling this way because she is depressed, she is feeling depressed because she is feeling this way.
And she feels hopeless … and judged.
So this narrative points out several important aspects of illness.
First, it shows that living with a condition and not knowing what it is, is confusing and isolating. While a diagnosis may be hard to accept, it also brings answers to our problems. That is why I am an advocate for seeking professional help. As a Hispanic woman, I know we are the ethnic group least likely to access health services.
My fellow Latinos, we need to stop these shenanigans.
Secondly, this narrative shows the harmful effects of stigma. Jasmin lives in fear of being judged and criticized for something she can’t help. And this has dramatically affected her sense of self worth.
And finally, her account also demonstrates why it’s important to have a strategy for coping with illness. Strength alone won’t do it unless we have an action plan. For tips on how to manage a new diagnosis, please refer to my blog post, So You’ve Just Been Diagnosed, Now What?
Now, I’ll leave you to Jasmin’s piece as I’m off to cause mayhem elsewhere.
I am Tired, No, It's Not an Excuse
by Jasmin Nolan
I sit here trapped in my body, kidnapped by whatever this is.
I tell myself everyday that I’m still the same person I once was, a bright and happy woman who would burst out of bed excited for the day to begin. But somewhere along the way I turned into the person I am today, someone who feels like she is fading away.
I sit in this chair in the house I keep so dark. Today I don’t want to leave. That is because I am exhausted. Today. Yesterday. Tomorrow. All of the time.
It doesn’t matter how much I sleep, rest, or eat. I am always tired. And I don’t understand why.
A few years ago I longed for the things I have today. I wanted stability, a home, a car, and the ability to go to the craft store and splurge without feeling constrained by an empty wallet. Now I have all of those things. But they sit there, like I do, and collect dust.
And as everything around me collects dust, I collect frustration at not knowing what is going on with me.
What happened to me? I don’t understand because I used to be so many things.
I used to be so great at crafting. In fact, I was called Little Martha Stewart by friends and family. I had all of these ideas. And if I had gone through with them, I’d surely have a shop by now.
So am I ungrateful then? Am I lazy? I don’t know. I read self-help books often to try to understand me from a different perspective. Maybe those self-help gurus have the answers. And for some time I concluded that it was my attitude about life that was the issue. Maybe it was all the challenges I’ve endured that finally caught up with me. And so did I give up?
I no longer have energy to keep motivated as I used to. The odd thing is that I feel like my soul and my creativity are strong. Regardless, I have no energy to put those two to work. And that makes me feel like people see me as a failure.
I imagine others think I make it up so that I don’t have to do anything. How convenient. I don’t blame them though. Sometimes I believe that I do make excuses.
But how can I know I’m doing something hurtful to myself and not be wise enough to correct it at the same time? Why do this to myself?
This confusion leads me to get so upset at my body. That same body that at only 22 feels like it is giving up on me.
Why are my hip and wrists hurting?
Why are my back and my face cramping?
Why are my hands feeling like they’re closing up?
Why do I have a tremor on my little finger once in a while?
Why is my vision going blurry?
Because of all of this, I am so angry with myself all of the time now. I feel I was born to be someone destined to amazing things. Before, I would do anything I set my mind to. But now I’ve become someone tied to a chair as I watch the life I dreamt for be destroyed.
I can’t think like I used to. When I am driving I feel in a deep fog. I have to continuously keep myself focused on the moment. I get so angry when I can’t remember things, or when I loose the words. I feel like I have these amazing ideas with all of the resources to carry them, yet I can’t figure out how to do it. I know how, but there’s something blocking my brain from remembering how to do it.
It’s infuriating. I know what a great person I am, but nobody around me can see it. And I’m screaming as loud as I can but people just think that I am trying to con them.
“She’s all talk,” they must think. I think that too sometimes.
Several weeks ago, I decided to figure out what was this I have been living with. Why the exhaustion? Why the fog? Why the lack of motivation?
After several visits to the hospital and many frustrating experiences with rushed medical professionals, I finally got answers.
I spent a little over two hours talking to one of the most dedicated doctors I have ever met. From all of my symptoms and tests, he concluded that I suffer from Myalgic Encephalomyelitis (ME). Erm, what? He explained to me that this condition is most commonly known as Chronic Fatigue Syndrome (CFS). Oh. That makes sense now.
But Chronic Fatigue Syndrome is a name I personally dislike because the name itself takes away from how serious and horrible this feels.
But allow me to explain before we go any further. CFS is a neurological chronic and incurable disorder. It will cause me to have fatigue and to get extremely tired after simple things like going to the grocery store. I will have problems with thinking and memory, dizziness, muscle pain and aches, joint pain with swelling or redness, headaches, and digestive issues.
Sleep will not help.
To be more thorough, my neurologist also sent me to get tested for possible causes or underlying disorders. At first I felt hope, maybe, I thought, if I find the cause, we fix the problem.
That was until I remembered that word “incurable.”
So just a week after diagnosis, I am sitting in my dark home writing this trying to process this hard discovery. I wonder,
What will the quality of my life be?
Will I be able to be the mother I want to be?
What does this mean for my marriage?
Despite all of my unknowns, I am glad that I finally know, at least part of the answer.
Learning how to successfully cope with CFS will be a journey, one that I am trying to mentally prepare for. I will keep reading self-help books and researching treatments for this disorder that has none. I will keep listening to motivational speeches and try dragging myself to the gym.
But for now, I need to take this moment to grieve.
I need to grieve the illusion of the woman I thought I was and accept this thing … this thing that at some point in my 22 years kidnapped me. This thing that I don’t think, at least not know, that I can escape.
To reach me, please contact me at firstname.lastname@example.org
For more information and support on Chronic Fatigue Syndrome please refer to:
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The Ins and Outs of OWN IT: A Blog on How to Show Bipolar Who's the Boss
A blog for people with mental illness written by an unstable, unpredictable, and uninhibited woman diagnosed with bipolar disorder
Covers all topics including relationships, coping mechanisms, entertainment, and everyday resources
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Disclaimer: OWN IT is a first-hand account of bipolar disorder designed to orient those diagnosed with mental illness. It by no means intends to offer medical advice. If you are diagnosed with an illness, or think you may suffer from one, please seek professional help. Otherwise, take my words lightly and have fun reading!