chronic fatigue syndrome · mental health · Uncategorized

Disappointing: What it’s Like Living with Chronic Fatigue Syndrome

03 November, 2016

If I had to summarise the most frustrating thing about living with Chronic Fatigue Syndrome (CFS), it would be disappointment.

Disappointment: A specialist in CFS told me that this would take years to become fully manageable, and that I needed to lower my expectations of what I could accomplish over the next few years.

Disappointment: I don’t even know what caused it. It just turned up a few years ago and started to slowly wreck everything.

Disappointment: I am a disappointment to myself. More than anybody else, I let myself down daily. I am not capable of accomplishing everything I want to.  I say I will do something but can’t do it. When I really need to, I just can’t “bring it”.

I am a disappointment to others. I have been told so, by people I cared about, that I let them down, that I’m not there for them when they need me. I can’t do it. My responsibilities suffer. I cancel meetings, I pull out of social events at the last minute, because I simply don’t have the energy. I struggle to maintain friendships, and slowly, over time, I can feel them dying.

I feel the weight of disapproval all the time. I am my own worst critic.

If I had a dollar for every time I had “that” look. Every time I tell someone who doesn’t know me very well, and doesn’t understand my situation, that I just had my hours reduced from 18 hours a week to 15, and that I’m still really struggling with the workload.

I get that look of confusion. “But you’re young, you’re a man. You can handle it.”

What’s more, everybody has their two cents on how to fix me. “Why don’t you try going to the gym?” “Just get more sleep.” “Have you tried eating x?” “It’s probably just all in your head.” Ad infinitum.

Everybody has something to say, but so few people have the time to really listen.

Nobody is more disappointed with me than I am. I am 24 years old and am not capable of independence. I can’t hold a full-time job. I can’t pay the rent. I can’t afford the expenses. I am stuck here with my parents, and I will probably be “that guy” for the foreseeable future. Doesn’t that make me less of a man? I was constantly told, “Why don’t you just move out of home?” You don’t understand how much of an insult that is. I already feel like enough of a failure, like enough of a child, without your condescending disregard.

It is humiliating and disheartening. I have finished university, which was a nightmare of endurance and struggle, and sometimes it looks like I have nothing to show for it. I have worked very hard, but not hard enough.

Nobody is more let down by me than I am. To constantly fall short of your own standards. To set a to do list and get nothing done. To make plans and cancel them when you can’t get off the couch. To commit to eating better, exercising, sleeping more, yet these are the first things to fail. The fatigue is like a tidal wave; when it hits, it hits hard, and you won’t always see it coming.

I am reminded on a daily basis that I’m a failure. I can’t be all that I want to be, and I can’t be the person that you want me to be. I will let you down, and I always let myself down.

Grace for Disappointments

That’s why I started this blog. I’m preaching to myself. Whenever depression sets in, I remind myself of where my hope is, and where my worth comes from.

Everything I have just said is true, and no number of self-help cliches can change that. While I love health, nutrition, and life hacking, there are no easy answers for this sort of thing.

But thankfully, my self-worth is not based on my job. My masculinity is not based on me being independent. It is not based on me being able to impress people. It is not based on success. In fact, it does not even come from me. I have no right to even determine my own self-worth. I fail at that, too.

My self-worth is secure because it was given to me by God. Nobody can take that away, including me.

Even though I disappoint myself, and others, I am not a disappointment to God. I am given grace, love, and forgiveness when I fail, every single day, morning and evening, and everywhere in between.

Christianity is the only religion that truly understands the human condition. We are all failures, because we are human. We can never be good enough to earn approval. We are weak, and failure is assumed. That is why Jesus came, died, and rose again. To give new life to those who failed at it.

So every time I am tempted to let my circumstances define me, or my health, my own disapproval, or the disapproval of others, I go back to this.

When I do, the black dog leaves, the tightness in my chest is relieved, and I literally pick myself up off the floor and keep moving forward.

Carlin


Grace for Failures is the blog of Carlin Doyle to encourage and inspire people who have gotten life wrong for a long time, and want to try and do things a little differently. Click here for more info, and here for more posts.

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