lifemental healthpre-dialysis

You used to be pretty; how Prednisone changed my life.

This is a post I’ve wanted to write for a long time. It’s one of those topics that’s been in my head (and my drafts folder!) for ages. I keep coming back to it because I’m convinced that it can’t just be me who has felt this way. I know there’ll be other people who are going to get it.

If, on the other hand, you read this and find yourself thinking I’m shallow and petty to be so worried about how I look when “surely there are more important things in life”, then I hope you’re never where I am.

Before I got sick, my knowledge of steroids was limited. I had some idea that bodybuilders used them to grow insanely huge muscles, but not much more beyond that. Come to find out, those aren’t even the same type anyway!

After I was diagnosed, and found out that treatment was going to be a combination of high dose steroids and a chemotherapy drug (Rituximab), the first thing I did was turn to Google. I’m not sure whether that was a good idea or not, because I very quickly found out what Prednisone does to you. Weight Gain. Even though I knew this in advance, I still wasn’t prepared for what actually happened to my body.

Prednisone weight gain - 6 months difference.
January 2012 | July 2012

I have never been slim, I’m 5″5′ and in January of 2012 I weighed approximately 70kgs. I didn’t love my body, but I was more or less ok with how I looked.

The more Prednisone I took and the longer I took it for, the less recognisable I became. I looked in the mirror and somebody else looked back. Unless you’ve experienced this, it’s impossible to explain how strange it was. Even now the photo on the right is strange to look at. It’s not even the most dramatic comparison, but I used it anyway is because it’s the only one I’ve got. I think that probably says quite a bit.

Obviously, I wasn’t the only person who noticed this change. Fortunately, most people are decent and the vast majority of them were either concerned, encouraging, or sensible enough not to comment at all. However there are always exceptions and in my case one of them was somebody I expected better from. I don’t remember the context of our conversation, but I’ll never forget the words.

You used to be pretty.

As if I didn’t feel ugly enough.

I know someone’s value shouldn’t be bound up in how they look. I knew that the weight was just a side effect of medical treatment I urgently needed, but that I would eventually be able to stop, and that when I did, the weight would disappear as quickly as it appeared.

But somehow, even with this in mind, and with many more reasonable friends to tell me this person was full of shit and needed to be ignored, it bothered me. It still bothers me now. So much so that I briefly considered not writing this post. It’s that raw.

Fast forward to now, in 2016. I’m currently on a very low dose of Prednisone (7.5mg) and have lost all the weight I gained, along with a bit more besides. Day to day, I feel ok about my appearance. I know people don’t look at me and think I’m ugly or sick. I’ve never caught anyone muttering under their breath “Look how fat she is!”

And yet, it’s still there. The underlying feeling, fear almost, that one day I’ll wake up and look in the mirror and that sick, fat, unrecognisable self will magically be there again. Some days I think it always will be.

I don’t have all the answers, so the least I can do is be honest.

5 Comment

  1. THIS! I feel exactly this way. Luckily, no one has said this to me, but you can’t help but feel it. When I was on chemo I couldn’t eat for 6 weeks, I lost 25 pounds and all my hair. Once I stopped chemo (& was still on high dose steroids) I promptly gained 45 pounds. I’m almost off the prednisone, but now kidney failure keeps me from losing the weight. I knew I cared about the weight, I thought I didn’t care about my hair (but everyone else sure did). People say things like “you’re still you”. Of course I am. Just a tired, nauseous version of me.

  2. Thank you for sharing, you are most definitely not alone. I too feel the unpleasantness of altered body & facial appearance as a result of life long Prednisolone. Along with that is the guilt about worrying about my fat face, jowls and thin hair versus the unbelievable gratitude I feel for my kidney transplant. I try everyday to not be shallow and fret, but to smile (because it lifts my jowls) and remind myself how bloody lucky I am. It doesn’t always work, sometimes only a self indulgent cry/tantrum will do, but I do try. I also find make up helps slim my chubby chops, and I live by the (modified) words of some great Roman chap who once said ‘I came, I saw, I contoured!’

  3. Prednisone is powerful. I was on tons of Prednisone after my Kidney Transplant in 1970. They didn’t have Tacolimus. I was on Immuran. Over night I changed. At the age of 13, I came home from school one day, looked in mirror, and did not recognize me. I was a fat Chipmunk. I was only 57 lbs and by the time I got to High School 3 years later, I was 90 lbs. Did not develop at all. I didn’t develop till I was 19 years old. It truely was an experience I will not forget. But very thankful to my Brother who gave me a Kidney at UCSF CA in 1970. It lasted 44 years. 2014 had 2nd transplant at UW Seattle, WA, only on 5 mg prednisone. What a difference. Thank you Lord Jesus….😄🌹❤

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