The Difficulty of Explaining Lupus Fatigue to Others

Learning to live with lupus fatigue for nearly five years has been one of my greatest challenges, both physically and mentally.

Initially, it was like someone flipped a switch in the middle of the night. I woke up the next day and realized sleep hadn’t rejuvenated me or boosted my energy levels. Suddenly, I was unable to recharge. I had to rethink everything I once knew about the concept of energy.

Fatigue is a regular subject of my columns because I struggle with it frequently. Since 2016, I haven’t spent a day without it. The lethargy ebbs and flows. Some days are better and easier than others, but it’s always present.

Adjusting to life with fatigue has been an arduous battle that I’m still fighting. Part of me is consciously trying to adjust, rest, and be patient with my body. But there’s also a part of me that still can’t accept that I’m restricted in a way other people aren’t.

True to my all-or-nothing personality, you’ll either find me taking it slow and easy or throwing myself over the edge with everything I have. Ideally, I would find a happy medium, but at this point in my life, I’m still jumping from one extreme to another.

The thing is that the peaceful, resting version of me only exists at home. People only see the hyped-up side of me. When I go to work, I put on that energetic side of me like a costume. As I walk out the door, I make a deal with myself to keep it on until I’m home again. Unless it’s urgent and necessary, I force myself to keep up that façade until my feet are back inside my front door.

Why do I do this? Why do I hide away half of myself from the outside world?

It’s partly because I don’t want anyone’s sympathy, and I don’t need their pity. I don’t want to be looked down upon or thought less of. I want people to have the same expectations of me, and I want the same level of respect. I have spent much of my life trying hard to stand out, to be different and memorable. But with this one aspect, I just want to be “normal.” I want to be like everyone else.

There is another reason I don’t disclose my tired side to anyone outside my inner circle. It’s difficult for people to comprehend that fatigue is a spectrum.

Fatigue can present itself in an infinite number of ways. On a great day, it’s that faint, unrested feeling healthy people know as “tired.” On a terrible day, it feels like I have a gorilla sitting on my chest, pinning me down. Fatigue can feel like I just need an extra hour of sleep, or it can feel like I won’t be getting out of bed at all that day. But it can also be any of the million increments that exist in between those two parameters.

Fatigue can be devastatingly debilitating, but it isn’t always. Sometimes it feels like a dull weakness. But it can also feel like I lack the strength to lift my head off the pillow. Each person is different, and every day in their lives is different, too.

Regardless of how someone is affected by fatigue, there is something you can do to help. Be understanding to the best of your ability. You don’t have to be in someone else’s shoes to show them compassion. In the face of something you don’t understand, be patient and kind.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.