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The Part of Chronic Illness That Often Goes Unspoken

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A seemingly minor issue with chronic illness that can have an incredibly detrimental impact on your mood is fatigue. Extreme tiredness and lack of energy are common symptoms, and oddly (and frustratingly) often excluded when treating enduring diseases. This fatigue would be bearable were it only during a flare-up, or when we’ve been hit by a nasty bug to deal with on top of our illness, but this is all the time we’re talking about.

All day, every day.

Unfortunately, there really is fairly little to be done to attempt to combat it.

Many people living with any chronic illness would tell you that day-to-day activities tend to take a lot more out of you than a “healthy” person. Personally, it seems no matter how much rest I get, I still wake up feeling beyond shattered. This is tiredness on a whole other plane to what I’d experienced pre-Crohn’s disease. It means that the simple task of dragging myself out of bed becomes a mammoth one. “Not uncommon amongst the human race,” I hear you cry. “No one likes getting out of bed.” Let’s face it: What I’m talking about is not the idea of getting up and heading to work when you would ideally like another couple of hours before facing the day; I’m referring to the physical aspect of getting up and ready.

For me this is one of the hardest parts of the day. I usually wake up with stomach cramps, desperate to reach the porcelain, and the mere thought of getting on a bus and working all day is hard to bear when you wake up feeling like you’ve been pulled out of hibernation three months early. 

To someone without Crohn’s or any other form of chronic illness, all this may sound a tad dramatic or even silly to complain about. What I’d say to you Doubting Thomases: If you have felt like this once or even twice, remember how awful you felt and how much it took out if you. Now imagine that every day, for the rest of your life. Quite a depressing thought, eh?

Every day in life I am aware of the fact that I have Crohn’s disease. I wake up and go to bed having felt it, thought about it, been irritated by it or all of the above. But some days I know I have Crohn’s. It hits me like a bolt from the blue, and I am floored by it.

These days usually come after or during a bad flare, but sometimes they are completely unexpected.

Some days, the reminder I am not ever getting better is almost too much to bear, and I feel entirely overwhelmed.

I feel like I am on the outside looking in on myself and in that moment I feel utterly hopeless.

It is a cycle that repeats itself daily and can therefore lead to very low moods. It can seem there is no light at the end of the colon when things as simple as getting up and going to work are utterly exhausting.

This mental vicious circle can be almost unbearably hard to break. This is the part of Crohn’s disease and many other chronic illnesses that for the most part goes unspoken.

But not by me.

I’m not ashamed of these feelings.

That doesn’t mean they don’t antagonize and frustrate me, because they do, incredibly so. But unlike chronic illness, they are only temporary. These blue moods are a part of my illness and therefore a part of my life, and like the Terminator, they will be back. I have accepted my condition, but I know it will hit me brick-in-the-face hard from time to time.

That’s not something I look forward to, but I don’t spend my life waiting for it either. I live my life to the fullest and best of my ability when I have the physical and mental capacity to do so (and try not to be too hard on myself when I don’t).

When I am low, I know it will pass and I cling to that. I hope you all find the strength to do the same.

Follow this journey on Crohnological Order.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: January 8, 2016
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