How Scales and Prednisolone Nearly Ruined 20 Years of Healthy Self-Image
With three daughters to raise, my parents always worked hard to promote positive body and self-images within our family unit. Ever since I can remember, my mum has tirelessly emphasized that we should accept our bodies as we are, ingraining within us a sense of confidence and pride about our appearance. In 20 years, my confident self-image had never been directly challenged, but, boy, did that change when I encountered prednisolone!
Though I had long considered my body image unshakable, prednisolone turned out to be my Kryptonite. I think the reason it hit me so hard was that it didn’t just change one part of me, it changed every part of my appearance – and there was absolutely nothing I could do about it.
In only a couple of months, I went from being entirely confident about how I looked to avoiding mirrors wherever possible. From the endless hunger to moonface, prednisolone broke me down like I never believed possible. Not only did it strip me of the self-image I had once believed to be unbreakable, but also it challenged me to rebuild a crucial part of myself from complete scratch.
I’ve always been lucky to have a very healthy relationship with food. I love to eat; it’s one of my favorite things in life. With the help of fast metabolism and regular sports and exercise, I’d never found myself in a position where that love could’ve been compromised.
But just after my diagnosis, I was given two things that could have had the potential to destroy both my relationship with food and my body image forever: prednisolone and the instruction to weigh myself every morning.
To put the situation into context, the most obvious symptom that sent me to the emergency room, and in turn saw me diagnosed with lupus, was that I had gained 12 kilograms (about 26 pounds) of fluid. And while weighing myself was incredibly necessary to keep track of whether diuretics were working to rid my body of the excess fluid, stepping on a scale every morning was destructive for my mental health and body image.
My body flushed out the fluid within about a week, but to ensure that the medication I was prescribed took affect and that my kidneys were starting to recover, I had to continue to weigh myself.
About a month and a half after my diagnosis, the prednisolone kicked in a whole new way. My face was suddenly more round than I ever imagined it could be and, I just couldn’t help myself, I craved food like never before.
There was a pivotal point where I realized how damaging a number on a scale could be. Getting up in the morning, I would see that little number on the scale screen and even though I knew fluctuation was absolutely normal, I found myself irrationally fixated on even the smallest of weight gain.
But I was incredibly lucky. I was strong enough to stop myself and to acknowledge when it had started to become an unhealthy habit. Looking back, I’m so grateful for that moment, as I can’t imagine the damage that mindset could’ve done over the months that followed.
On high doses of corticosteroids, my situation got worse before it got better. Overeating meant my clothes didn’t quite fit right, and for months, I struggled with my face shape alone. I shudder to think about how much damage I could’ve caused if I hadn’t had the restraint to stop weighing myself.
Just like that, 20 years of support, good habits and positive self-image could have been rendered useless at the hands of medication and a simple machine. I never would have guessed that something so crucial to my physical recovery could turn out to be so detrimental to my mental health and body image.
If you’re out there and this hits too close to home, please know that you’re not alone; many of us have been there and some of us are likely to have to be there again in the future. I know how badly it sucks to have your medication wreak havoc on your body, but we stand united and defiant in this battle against lupus, and you’re beautiful. Don’t you ever believe any differently!
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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.
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Comments
Sherry Bartol
Been on this 7 years. Hate all the weight I put on and won't come off til I can get off this stuff! Why can't they make something that works without the weight gain
Kristiana Page
Hey Sherry!
Sorry to hear that, I know how hard it is to be uncomfortable in a body that you don't recognise! It can take such a huge toll on your self esteem as well, such a hard trade off for when it's aiding your health!
Kristi x
Dalila
Good article.
It is very difficult to cope with the body changes, people's reaction, and pictures of you and your moonface when you have your first flare.
I would usually hear comments such as: Have you got your wisdom teeth removed? (moonface), have you got chickenpox? (rashes), have you been eating much more lately? (steroids weight gain).
Not very helpful at all, but we have to keep strong and focus on Lupus remission.
Kristiana Page
Hi Dalia,
I know! And it can be such a touchy subject as well, if anyone had commented on my face when my moonface was at its worst I think I would've bawled my eyes out on the spot. And the weight gain, oh wow! I could've believe how ravenous I was!! But you're absolutely right, there is a long term goal, we just have to remember the bigger picture don't we!
Kristi x
Jill Blackstone
I totally relate. I never gave much thought to how I looked because I had a healthy sense of self and because it came pretty easy to me -- my mother read every label of every food so I ate carefully, and I was always very active but athletically and just in life. Then came lupus, and prednisone, and everything changed. In fact I have declared prednisone my mortal enemy and told my doctor that hell will freeze over before I take it again (I've been through 2 long-term courses of high dose that took a year and then 17 months to taper off of). Everything about it is horrifying. First comes the moon face, which if you've had it you would recognize a mile away. You may have hair loss or growth; I got the best of both worlds -- my once gorgeous thick mane of hair falling out and receding while fuzz popped up on my face and back. Go figure. The intensity of moods that defy logic. Can't sleep through the night. The odd cravings. For me, I didn't change anything about the way I eat, and I'm not an over eater, in fact I'm a healthy and conscious eater. Didn't matter, I have gained 70 pounds. It will come off, it did last time, and deep down I tell myself to be patient. But the truth is, the world looks at your differently than you feel inside and it is a shock each and every time you pass a mirror and see what other people see because it doesn't match how you feel. It is an unfortunate visible reminder that something has taken over your body that is beyond control. Once I embraced that metaphor and that irony, I was able to accept lupus in a new way. I had for so long resisted telling people I had lupus or being open about the lifestyle changes and medical treatments, but when I realized that everyone could see that SOMETHING had changed, it let me explain what that was. This time around I've so far lost almost 15 pounds and it's a long way to go. The taper this time was hard, and it will be a while before my body resets itself. I know it will happen, and that is where my sense of self has become stronger. Don't get caught up in what you look like. Care more about how you feel.
Kristiana Page
Hey Jill!
Your comment about Pred being your "mortal enemy" made me laugh, as it's just so relatable and accurate! I had all the same side affects as you, at it's worst I was up until 3am obsessively cleaning the family fridge because that's what kind of mood I was in, and there was absolutely no logic to anything. I had arguments with my family over the most trivial of things, I'm just lucky they were so understanding that it was my medication!
That's a beautiful realisation you have there and I'm so happy for you that you managed to accept that - I just couldn't convince myself at the time unfortunately :( A mindset and mantra that many of need to embrace while dealing with Prednisolone! Such wise words and so very true!!
Kristi x
Terry Ann
Hits close to home..been dx for 2 yrs w lupus been on prednisone for over a year gained nearly 100 pounds. I'm devastated trying to wean off it but not sure I can. I hate it.
Kristiana Page
Hi Terry Ann,
I'm so sorry to hear about your weight gain, I know how that feels and it's not a fun headspace! Remain hopeful, I know it's hard to be patience but slowly the weight and the moonface goes away! Definitely one of my most hated types of meds - if not the one I hate the most!
Kristi x
Sandra musto pridham
Your all the same people in side your still beautiful to friends husbands and you children un less you go on steroids under weight I was five stone ten so they done me a favioure .But I do no were you all I comeing from my son Pete was on them and his weight went on fast and furious and now going to weight watches stay strong and posotive its all easya said then done
Kristiana Page
Hey Sandra!
You're absolutely correct! It can be hard to remember that when you get in a certain headspace though unfortunately. My family would constantly remind me that I was still beautiful no matter what my facial shape was but I just couldn't get it through to myself. It's not a fun medication by any means.
Kristi x
Kris
This describes me perfectly. I struggle every day with self image. Thank you 💜 for this article it really made me feel not so alone.
Kristiana Page
Hey Kris!
I know that struggle and it's such a tough one to go through! It's so hard to believe your friends and family when they tell you that you're beautiful regardless, however they're so right and we really ought to believe them!! No, thank-you for reading, you are the reason I write! Glad you can feel like you've got someone on your side, never in this alone!!
Kristi x