The Difficulty of Explaining Lupus Fatigue to Others

Kristiana Page avatar

by Kristiana Page |

Share this article:

Share article via email
goodbye, Rare Disease Day, fatigue, control, happiness, love, Extraordinary doctors

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.

***

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.

Comments

Moe avatar

Moe

Kristi, I 100% relate to this article. It makes me feel good to know that you understand me!
Just yesterday I said to my sister "I've been having more energy the past few days and it feels great. The nice fall weather (Florida) is really making a difference to my body."
Then at 5:30am I woke up feeling feverish, nauseous and fatigued!! I got up again at 8:30am feeling the same. The disappointment is so real!
Now, the fear sets in re: 'will I make it her house tomorrow for Thanksgiving dinner or not?' and ' Oh no! I can't run the errands I had hoped to today' and 'what did I do to bring this on?!' and the list in my head goes on and on :-(. And so I am reminded yet another day how complicated Lupus can be for us. Keep strong Warrior. Hugs, Moe

Reply
Gail Jones avatar

Gail Jones

I've sent this page to my Sister as she has difficulty comprehending my condition, thought this may help as it's so well written

Reply
Liz Anthony avatar

Liz Anthony

Thank you for sharing this with the world. You often put to words the way I feel. While I don’t let it get me down, living with the chronic fatigue and widespread pain associated with Lupus has forced me to curtail what I do and when. I’ve often joked about being neither a morning person or a night person. I can’t remember the last time that I woke up refreshed and without pain. It takes at least an hour to get everything working and for my pain medication to to take full effect. Once I’m moving, it’s critical that I keep moving for as long as possible, so I plan all my mental and physical chores early in the day. Yes I’m one of those folks that makes a to-do list for the following day; it helps me feel that sense of accomplishment when I can check items off as completed. On a typical day, I begin going downhill shortly after lunch and I know that if I push through, then I won’t have the energy to fix dinner, and I’ll likely pay for it for several days afterwards. It’s manageable but requires accepting my limitations and finding ways to cope and regain control when I have Lupus flares.

Reply
Ruth Smith avatar

Ruth Smith

Wow, I've just found this website after suffering with lupus (SLE) for 25 years. This article reflects a mirror image of myself. It's the first time I've heard anyone describe lupus fatigue so accurately. Just want to say thank you. It's good to know at least one person our there understands. Take care and keep smiling xx

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.