The Mantra ‘I Have Lupus but Lupus Doesn’t Have Me’ Is Nonsense

The Mantra ‘I Have Lupus but Lupus Doesn’t Have Me’ Is Nonsense
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A while back, I shared a mantra I learned in the military years ago that’s been echoed by many. I had realized that the phrase I’d been indoctrinated to believe — “pain is weakness leaving the body” — is, for lack of a better word, hooey!

Another nonsense phrase is, “I have lupus but lupus doesn’t have me.” Lupus has its pinky finger up my nose and is leading me around town like a circus clown. It’s wearing me like cheap perfume.

In the years since my diagnosis, I have put on a brave face and said I was the one giving lupus a run for its money. All the while, lupus sat in a corner keeping an eye on my favorite things to do, the events I look forward to, and even new clothing items I make. (Time for super weight loss. You’re not wearing that anymore.)

I’ve seen the inside of more hospitals than I care to remember, thanks to lupus. I’ve seen specialists I never knew existed until I needed them. Hemo who? I’ve popped more pills, had more needles in my arms, and been in more high-powered machines than I ever thought possible, and I’m not done — I can assure you of that.

Lupus lets me know it’s pushing all the buttons and pulling all the strings. I bend to its will, not the other way around. As if to show me who is in control, it not only moved into my body like a squatter, but also brought family in the form of other miseries that refuse to leave unless I call the law (such as ugly medications that hurt almost as much as they help). And once they feel safe, they rear their ugly heads again.

I don’t want you to feel beat up or as if you can’t win. Though lupus shakes me like a rag doll (can you tell I love these funny analogies?), I want you to know where it’s not winning. Regardless of the pain, the fatigue, the many hospital stays, and the multiple specialists who now see me regularly in two different countries, my attitude is “go.”

I have been rolling around in pain for a few weeks now. I have been having “huff-and-puff” days. This is when I get winded from standing. No matter what, I still do my best to keep going. My body is being worn down on many days but my spirit is strong.

This is a choice I make daily. There are moments when I become overwhelmed. Tears are inevitable on those days, but I let them flow. They are my pressure-release valve. Then, I am back to being as optimistic under the circumstances as I can be.

I have no idea what will happen in the future. I do know that I have no choice but to handle things as they come. I could simply sit down and feel that I have no control over anything. That would truly leave me feeling hopeless.

Instead, I try to find things that add sunshine to the day, bring a smile to myself and others, if possible, and admit that lupus is dragging me around. I will do my best to at least control what I can in the process. I get to decide on positivity, happiness, and humor.

I hope you, too, will do your best to stay as hopeful as possible when lupus manhandles you. If you must cry, scream, and be angry, that’s natural, too. I’ve certainly got those feelings, and I let them flow when I need to. However, I realize I would not have those feelings if lupus did not have a certain amount of control over my life. To cope, I must finally admit that.

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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.

Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.
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Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.

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16 comments

  1. Brenda O'Brien says:

    With lupus, control is something I’m always looking for. I’ve been sick for a while, I’m not sure what’s amiss, and it is frustrating to have to just stay home when you want desperately to just go for a walk yet luck the energy to get out of your chair. I know this will pass, lupus symptoms eventually do, but I chuckled at your analogy of lupus having its pinky finger up your nose leading you around. Thank you, Kellie!

    • Kellie McRae says:

      Hi Brenda, lupus def has a way of holding us back at times but as you said, it will pass eventually. I’m glad I could at least make you laugh. Hoping you’ll get that walk in soon!

  2. Darlene McIntosh says:

    Kellie, you definitely are an inspiration to all of us who have lupus. You really hit the nail on the head in your articles. This disease does control us and the medications are brutal..but we fight.

    • Kellie McRae says:

      Hi Darlene, thank you for your kind words. I think I started off buying into this mantra but the longer we battle, we learn new strategies. Some work and some we really should say….that’s nonsense and allow it to help us admit to what is going on and try to find actual positive coping mechanisms.

  3. Deborah says:

    Kellie,
    Thank you for your brutal honesty, it is much appreciated. I too have SLE and there are days where I huff and puff doing nothing. The meds. a horrific and hurt as much as Lupus. Lupus not only comes with its own set of problems but gives a myriad of gifts in its wake. I have arthritis, fibromyalgia, heart problems, Sogrens Disease (misspelled), the winters are hard, the hot summers are harder. So what to do? Just what you said, release what needs to be released and keeping our sense of humor. Thank you. Namaste Kellie.

    • Kellie McRae says:

      Hi Deborah, Lupus does indeed seem to invite party crashers to make our lives as difficult as possible but we really do get a choice in our attitudes. I know this choice is not always easy but it helps I hope. Thank you for stopping in and sharing, I am sending you comforting vibes. I hope you find relief on more days than the days that your body is mean.

  4. Maureen says:

    Hi Kellie, A fellow Lupus Warrior turned me on to you a couple of months ago. I watched some of your you tube videos and instantly viewed you with Gratitude! You are a beautiful Lupus Angel. And then I found you again on this site that showed up in my email 🙂
    I love your writings, your candidness, humor, your strength and your weaknesses and the inspiration that I gain from you. You are a pillar of strength sharing your life and lessons and I send you hugs and blessings. Keep strong, keep smiling. With care, Maureen

    • Kellie McRae says:

      Aww Maureen, thank you so much. I need that encouragement, knowing I’m helping others helps me carry on because some days are really tough so thank you for encouraging me today! Sending those hugs right back your way 🙂

  5. Carol W Waldenburg says:

    I don’t like this at all. Language as you are well-versed in manipulating in a good way Kellie, is a powerful thing and I have found that I NEED to distance myself from THE LUPUS through this simple tool. It gives me power to say the Lupus, not my Lupus. At times this disease has almost killed me as it has many of us here – I don’t want to give it any more power through language than it already has in my body. I keep it at bay visually and emotionally through distancing language. Perhaps others can too. No disrespect.

    • Kellie McRae says:

      Hi Carol, I would never take what you feel as disrespect just because I believe something differently. Quite the contrary, I am always happy to see a different perspective. We all have our way of coping, your way is right for you, if his mantra helps you, shout it to the moon and back. I am all about doing what works best for each of us.
      There is no one size fits all type of thing. For me, I think for my mental stability, I had to really just accept that I feel lupus is first in so much of what I do these days that to tell myself it doesn’t have me felt like a lie. This works for me, it surely does not mean I want others to make it their way if it does not work for them. Thank you for sharing a different perspective, I would find it more disrespectful if you just blindly agreed because it seemed easier. I appreciate your point of view for sure.

      • Peg Castagnola says:

        Hi Kelli, at 70 years old I became very sick and spent 70 days in hospitals and rehabs. I was so fortunate that a rheumatologist was called in after I had reached the point I thought I was dying. He Identified that I had severe SLE and has been my godsend In working with me to bring me to health. I fought for the next 6 months to walk again and climb steps. But just when I begin to feel great, my symptoms reappear. It is difficult for me to separate the effects of lupus from just growing older. I have always been very “sturdy”. I miss my old self. Your article made me feel “ normal”! Thank you for sharing what you go through.

        • Kellie McRae says:

          Hi Peg,

          I’m glad you got a great doctor, I’m sorry that you’re not feeling well. I also understand the meshing of growing older and lupus. I often have those same thoughts. I wish none of us were affected but I’m always grateful to know that what I experience helps others. I’m sending you well wishes.

  6. Gaile Valcho says:

    Hey Kellie,
    You always seem to hit the nail on the head with what I am feeling. I hate when I hear others say to me ” Hey, You may have Lupus, But…. ( fill in with whatever cliche you want here)” No one can understand what the heck life we have been handed unless you are living this insidious disease. Maybe I’m too new at this illness yet, but I haven’t found the silver lining to all of this. I hope I get there one day.. XOXO..

    • Kellie McRae says:

      Hi Gaile, I try to tell myself that people mean well but sometimes I just want them to close their mouths and go away 😀 Its not an easy battle, many don’t fully understand to what extent we had the proverbial rug pulled out from underneath us. It’s hard to deal with but hopefully, you are finding some joy, even if you don’t find the silver lining, still finding those things that add happiness is huge. Thanks for sharing your thoughts with me.

  7. Em Hooper says:

    Hi Dear Kellie
    Thank you for sharing with me your attempts at growing pumpkin, in a previous post (chuckle) and kudos for trying. It was wonderful to hear from you … I may have a go at writing a book one day however am trying to complete my Essay Writing unit; easier said than done LOL
    I thought I would share my speech I gave via Zoom some months ago now as part of our Prep Skills unit, to my fellow class mates and lecturer, Violeta. I hope this is okay and puts a smile upon your face, thank you.
    My name is Endure and I have an autoimmune disease Lupus, Fibromyalgia (FM), thyroid troubles and menopause to top the list off; the first two I’ve borne for 16 years but, let’s not dwell upon the sadness of these matters for I am here to share the funnier side of traversing these irksome ails.

    Where do I begin? Let’s start with a fibro fog mind. Sometimes I put the milk in the pantry and the tea towel in the fridge. Sometimes I forget words or what day it is, where I’ve placed things. I put my clothes on inside out and drive my son mad repeating sentences or stories. What was I thinking taking on Prep Skills (Tertiary prep course)? My short term memory is totally dysfunctional! Notes are my best friend. I have them on my phone, on the wall, the fridge, my hand, everywhere!

    My partner calls me a crazy woman and he’s right! When my malfunctioning temperature gauge runs hot and I feel like a walking heatwave I go straight to our garden hose and dowse myself with cold water, fully clothed. What a relief! One must do what one can to relieve symptoms.
    On other occasions he often catches me in a compromising state of dishabille and claims I am always trying to entice him, which sets me off in a fit of giggles. How I wish that were true however, it is usually because I have had to bathe a few times, after a surprise visit from IBS or, ones bladder decides it ought to lower my water table levels, at a rate of knots, multiple times.

    I have a favourite saying of a morning when I arise and my people ask me how I am. I reply “I feel like I’ve been swimming oceans and climbing mountains!” If you were to film me sleeping you would see I am a very busy person. I snore the roof off the house, sing, laugh out loud, hold lengthy conversations, act out nightmares and issue an astounding array of grunts and groans. Sometimes I catch myself in the very midst of these activities falling into slumber. Even I find this amusing!

    According to statistics recently released by Brisbanetimes, listing Brisbane suburbs with the highest number of drinkers, Wynnum was right up there. I blend in perfectly with my fellow suburbanites by the simple acts of stumbling, staggering or tripping up. Though I may appear ‘three sheets to the wind’ at times, I assure you it is not because of imbibing in one too many alcoholic beverages but, compliments of my constant companions fatigue and pain, and don’t get me started in on pain.

    While the virtues of good nutrition, rest and relaxation, activities and work, family and friendships are nice, give me a good dose of humour any day and, you’ll have a friend for life. Did you know humour, mirth and laughter bear the same energy level as love? Well then on that note, Isle B Oakkay!

    I love reading your articles, very excellent scribing’s indeed and I look forward to further writings ahead.

    Warmest regards,
    Em

    • Kellie McRae says:

      Hi Em, I very much enjoyed this, I think we’d get along famously but I was doing silly things on purpose even before lupus. I laughed at you blending with the drunks. It is so wonderful having a sense of humor because I think if we didn’t…boy oh boy this would be extra difficult. Good for you for taking on the challenge that comes with this course and I bet your mates are happy to have you around, I have a feeling you lift them up on their difficult days. Sending you all manner of good vibes, keep smiling and showing others that while our bodies are insane, we can still smile and find joy.

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