A stoplight on red at the foot of a bed, where feet peek out from under the covers.

One Day I Went to Bed and Never Woke Up

My journey through living with chronic fatigue started about a year and a half ago. I can’t remember the exact day—everything seems to blend together these days. It truly felt as though I had gone to bed one day and never fully woke up.

It creeps up on you without any self-awareness

Many people with chronic illnesses share diagnosis anniversaries, but when it comes to chronic fatigue there really is no set date. At least in my experience. Days blur into one another. You slowly begin to lose the momentum you once had. You don’t really notice it until suddenly, you find yourself in a pattern of being glued to your bed. You slowly stop doing the things you enjoyed doing. You figure enough rest will get you back on track soon, but soon never comes. Time goes by until one day you realize you aren’t the person you once were. Everything has changed.

I don’t recognize myself anymore

There are many things that we believe define us: our hobbies, the way we treat people, the energy we carry into every day. With chronic fatigue, these are all things that unfortunately change. We have very limited energy. We may not be able to do all of the things we used to enjoy. The hobbies that once helped shape how we see ourselves, or maybe even helped raise our self-confidence, we can no longer do. The people we often surround ourselves with, we no longer have the energy to see as much as we had before. We start to forget not only our sense of youth, but lose our sense of social status as well.

The people I thought cared unconditionally left

The worst part about my experience with chronic fatigue is how many people I witnessed slowly pulling away from me. I could feel the energy shift in our conversations. I was constantly left feeling like I was at fault for the downfall of those relationships, simply because I was too ill to do all of the things I once could. Falling ill somehow turned me into the bad guy. It’s like it became this assumption that I was choosing to be this dull, desaturated version of myself. No matter how I tried to explain my illness and how it will affect my life, they never truly heard me out.

I’ve gotten used to people thinking I’m lazy (but not really, though)

The biggest misconception about chronic fatigue is that those who endure it are actually just lazy. It’s something I am constantly seeing in the community, as well as presenting itself in my own personal life. It’s a misconception that I can never truly wrap my head around because—who would really want to live like this? Spending every day missing out on incredible opportunities, both personal and professionally, and having to constantly cancel plans with friends. It’s torturous. Yet still to this day, nearly every person who suffers from chronic fatigue must face these judgments due to ignorance.

All there is to do is grow some thick skin and continue to educate and advocate.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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