Lupus-Induced Insomnia and a Feeling of Isolation

Lupus-Induced Insomnia and a Feeling of Isolation


Part of living with lupus is knowing that your body lives outside of the norm. It means accepting that, for the most part, you have no predictable sleeping pattern, and if you should be lucky enough to regulate one, it’s pretty messed up. Living with lupus means you don’t live on the same timeline as everybody else, as yours is dictated by lupus. Sometimes that leads to a feeling of isolation.

I’m no stranger to late nights and late-starting mornings. Going to bed close to midnight and waking up well after everyone else is my preferred sleeping pattern. But lupus takes it to a whole new extreme.

For many people, going to bed well after midnight sounds horrific. I am often asked how I manage to keep myself up so late. Believe me, it’s not my choice — it’s lupus.

I’ve tried tiring myself out with exercise, drinking herbal teas, reading books, watching TV, and even meditating. Sometimes these work. But most of the time, I’m left lying wide awake and frustrated. The only thing that seemed to work is knocking myself out with sleeping pills. But in the morning they leave me feeling hungover and unlike myself, outweighing the potential advantages.

In a bad patch, I don’t sleep until at least 1 a.m., and I’ll be lucky to rouse myself before 11 a.m. My body needs rest, and while it’s incredibly important to listen and help myself wherever possible, sometimes it means that I live completely out of sync with everyone else.

Some people take my extended sleep-ins as laziness. Others see me as lucky, wishing they could sleep in past mid-morning, too. But what no one understands is that it all comes at a cost.

Have you ever been wide awake, begging for sleep while the rest of the world rests blissfully and unaware? I have, and it’s an isolating place to be. There’s a silence that only 2 a.m. knows, and when you’re exhausted but unable to sleep, it’s deafening.

Some nights I lie there listening to episode after episode of Big Bang Theory and hoping this will be the one I fall asleep to. But the all-too-familiar credit track rolls around once again and I hear another episode begin as I lie there, eyes closed, yet so far away from reaching sleep.

It’s hard to explain the feeling of exhausted restlessness. You feel so alone knowing that the people who would help you in any other situation are fast asleep. You have to face this alone. I can’t justify waking someone up just because I can’t get to sleep. It seems selfish and mean. But I hate the silence and waiting.

There are moments when time flies and I wish I could hold onto it with both hands. And then there are times like these. Moments when every minute stretches on for hours and I can’t bring myself to check the time. It’ll only remind me of just how long I’ve spent begging the night for sleep.

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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 Services, and are intended to spark discussion about issues pertaining to lupus.

3 comments

  1. LisaJo says:

    This is exactly me. I stay awake every night until 2, 3, and even sometimes 4 in the morning listening to Star Treks Voyager episodes waiting to finally drift off. I get up at 10 every morning so I’m up before my husband comes home for lunch. I always feel ashamed that I can’t get up earlier. And no way can I take a nap. I have a major sleepy time around 6 in the evening but if I ever indulge in a nap I know it will start an even worse cycle of not sleeping at night even later than my already late nights.
    I’ve come to realize that this is just my life now and I’m a very lonely person because of it. Living my late nights alone and dark while the world sleeps…

  2. Lis says:

    Thank you for writing this. I have been struggling with this issue for many years now. Thankfully, I was diagnosed last year and know why this is happening. I just wish there was a cure.

  3. Eddie Phillips says:

    Hi Kristiana, this is a great subject even now Julie can feel guilty about sleeping in, and I always say “don’t worry about it”.

    Maybe all Lupus warriors should arrange a 2am skype call….lol

    The hardest part is getting friends and family to “really” understand the fatigue that accompanies Lupus.

    Look forward to your next column

    Eddie

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