Realizing that Fatigue Will Plague Me for the Rest of My Life

Kristiana Page avatar

by Kristiana Page |

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Psychosis and SLE

I’ve felt my fatigue ebb and flow since the day of my diagnosis. I go through patches of good, bad, and terrible. A little over a month ago, I hit a trough so deep it had me questioning whether I was making any headway toward remission at all. Surprisingly, biopsy results revealed that with every day that goes by, I’m closer than ever. This has left me with the hard-hitting realization that never again will I be without fatigue; it will be both an ongoing reminder of lupus and my constant companion throughout life, in and out of flares.

It’s incredibly difficult for me to accept that the part of my illness that has affected me most in my journey toward remission likely will remain the most prominent when I reach it. With the exception of the occasional rough patch, my fatigue seemed to ease incrementally with every month that passed. Maybe it was just wishful thinking, but part of me held onto the hope that remission would be more than just a mental victory — it would also signify a break in the cycle of fatigue for good.

Remission has always been the goal. For some reason, it always felt miles off, and I never took the time to contemplate what it might look like when I got there. With positive news, I’m trying to mentally unpack what I thought the finish line was going to look like. Somewhere along the line, I seem to have subconsciously chosen the ultimate utopian scenario, in which I lived free of lupus-related complications. Although I never consciously thought that would be my reality, the image haunts me, as it’s one that I long for but can’t ever attain.

You would think that since I’ve lived with lupus fatigue for over two years now, I’d be used to it. But fatigue is not something you ever truly get used to. The realization that it’s here to stay for the long haul is not one that I’ll be able to accept easily. While it took me only months to come to terms with my lupus diagnosis, I foresee this process taking much longer. I’m asking myself to accept that never again will I know what it’s like to wake up completely rested and refreshed from a good night’s sleep — and I just don’t know if I can yet.

How do I accept that no amount of sleep will ever be enough, that no amount of naps or resting will cure that lethargy I feel in all of my muscles? How do I come to terms with the fact that of the infinite number of hours I could sleep in my lifetime, no amount will ever stop me from struggling to open my eyes in the morning?

If I were a sleepy Superman, fatigue would definitely have to be my version of kryptonite. Unfortunately, I won’t ever be able to escape it; it’s mine for the duration of my life and there’s not much I can do about it. There’s no right answer for how to handle my situation. The most I can ask of myself is to push on through my bad days, endure the terrible ones the best I can, and be thankful for every good moment.


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.


Beth avatar


Thank you for being honest. I always hope that one day I'll be back to being non-stop. Your words give me permission to let it happen. Thank you.

Mona Doyle avatar

Mona Doyle

I was Dx with Drug Induced Lupus 7 month ago. I have had Psoriatic Arthritis for 37 years and have been through and used every Drug out there. I have had Remicade infusions for 8 years and now this, apparently caused by that drug. I have managed to have a career, travel, have a family, etc with the PsA thanks to the Meds. But this is, pardon me, kicking my ass. I have never felt worse or been so tired , ever. My Dr is treating me for the PsA with Oriencia now in hopes the Lupus will just fade away. So far 7 months and nothing. Has anyone out there suffered with this as well? I have done a lot of research and i am a retire Nurse, so that helps but not too much faith in my Dr at this point. The Dr mentioned sending me to the Mayo Clinic if this doesn't clear up. After 7 months and no end in sight,I may just insist this be done immediately. Thank you everyone.


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