Face to Face

By Nan Hart

3 min read

A positive self-image is challenging under the best of circumstance, but when you have a disease like RA, self-image takes a hit from many angles.

One of those for me had to do with the changes I saw happening in my face. I know that may sound odd, but in the early stages of my journey with RA, I was put on high doses of a corticosteroid to counter the inflammation, swelling, and pain. It worked great! But my entire body changed in appearance, and my face was one of the most noticeable to me.

Moon face: a corticosteroid side effect

When you see mentions of a “moon face” as a side effect of corticosteroid use, it is the perfect description! My face went from slim and long to round as a full moon in less than two weeks! I remember looking in the mirror and wondering who was looking back at me? Why did my face seem puffy and red? I was devastated. Along with the pain and discomfort of RA, I now had a new me to contend with. My self-image was already unraveling, so how was I to cope with this fun new look?

Moon face signified that my life was changing

I clearly remember crying over this multiple times, which I now believe were tears of loss as much as anything related to my appearance. I knew this “new me” was likely to be around for some time, if not permanently. I knew that my life was changing and would never be the same, and the moon face was just the outward manifestation of that radical life change.

Having moon face impacted by self-image

I know that now, did not know that then. I was grieving and my self-image was in shreds. I was still in the prime of my life, in my early forties, and had always prided myself on taking care of how I looked, fitness being a big part of my life. Now, suddenly, that was all gone. What to do?

Corticosteroid side effects & RA in perspective

First of all, after wallowing in the misery for a bit (necessary in my opinion), I chose to take stock of my new reality. Was this indeed permanent? Maybe, maybe not. Turns out, I did have a bit of a moon face for many years; but as the use of corticosteroids lessened, so did the extreme face shape. I came to accept the new shape and realized that in the grand scheme of side effects of RA, it was not as bad as it first seemed.

What makes up our self-image?

Did I like it? Absolutely not. But I also found that, with make-up, I could offset some of the shape and it prompted me to try some new cosmetics, which was fun. Beyond that, it forced me to consider what really comprised one’s self-image. Is it all about our outward appearance? If so, can we change that? I think we can and with a disease like RA that influences our bodies’ appearance, it is necessary to successfully deal with those changes.

Self-image and the changes of rheumatoid arthritis

Over time I came to understand that my self-image was a lot more tied to my coping and management of RA, than my actual appearance. Armed with that newfound knowledge, I was able to accept the bodily changes as long as the RA was under control. My face looked better when I was rested, pain-free and successfully managing RA. That was sure an interesting development! That is true to this day.

With many of us dealing with chronic disease, our faces are the portals to our health, indicating how we feel in any given moment. So, in the end, my self-image was tied to my RA management as is so many other aspects of this disease. I had come face to face with yet another revelation along the journey.

Nan

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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L rick Phillips Moderator & Contributor
I had a similar situation, when I was using corticosteroids my face also changed a great deal. Like you I found a way to cope. Unfortunately, in my situation, Sheryl was upset with me using her cosmetics. Worse still she stopped using the ones I really liked. Oh well, Christmas us coming. I always get her a gift card to the Ulta store and a list of the things I think she should purchase. now 16 years later, she still will not get anything on the list. rick - moderator
Jo Johnson Moderator & Contributor
Thank you for your thoughtful article. While I was on intermittent steroids I was able to lose a good 35 pounds. I was excited for my clothes to fit better and to have the weight off my joints. Now, on routine steroids, I consider myself lucky to have only gained 10 pounds back. For 2 1/2 years we've been chasing my symptoms with DMARDs and Biologics, but can't quite wean under 10-15 mg of Prednisone. The spring I was diagnosed, I was a mess and had to retire early. I am definitely better than at diagnosis, but with many symptoms continuing. What's amazing is how many people from my old job see me and tell how much younger I look! It's great. I bite my tongue and don't tell them how sick I was when I left. And a slightly plump 60 year old face actually looks a little younger! Fill up a few of those wrinkles. I don't tolerate anything over 15mg so I have not experienced full on moon face.
1. Monica Y. Sengupta Moderator & Contributor
 Hey Jo <inline-mention user-id="3158858" username="Jo Johnson"/> ! Thanks for sharing. I do agree that the Prednisone weight does drop pretty easily once I've lowered the dose, as well. Weirdly, though, this past increase, the weight dropped but my face stayed round (but only on one side). I am not quite sure what happened. I also agree that (even though I miss my naturally angular cheekbones) the extra weight makes me look a little younger. People mistake me for my late teens still. I guess that's a good thing? Lol. All the best, Monica
Daniel Malito Moderator & Contributor
<inline-mention user-id="3215224" username="Nan Hart"/> I was on high doses of prednisone for one of the worst periods in my life - the period that made me start writing, in fact! I gained almost 90lbs in such a short period of time that my skin on my torso is forever scarred with stretch marks like a striped candy cane. It also distended my belly so badly that it gave me spine issues. It took me over 5 years to lose it all, so I get it. I didn't even want to go out during that time. Serious stuff. Keep on keepin' on, DPM
not found
I was given prednisone as a teenager when I was diagnosed with JRA. I am allergic to aspirin, so back in the 70s there were not a lot of other choices. I have been on and off prednisone over the years - on higher amounts when diagnosed with lung cancer and forced to stop all other RA meds. Now down to 3.5 mg daily, not able to get lower. Moon face, huge amounts of weight gain, and now osteoporosis!
Mary Sophia Hawks Moderator & Contributor
Nan, What a great article! Oral steroids do a number on me, especially my emotions. I end up a weeping mess! When I have to have steroids, I get a shot. I seem to tolerate that much better. You bring up a valid point: managing our RD does feel like a victory, even on a rough day. Thanks for writing. Mary Sophia
bella14 Member
To treat RA you must first treat the inflammation that causes RA. You MUST change your diet. No dairy, meat, sugar, etc... you’ll have to download the RA menu. In doing so in about 2 months you will not need any medications at all. I have RA and cut out everything that caused the inflammation. You should also take 10 minute walks if you can. Doctors will never tell you that you must first treat what’s causing the RA because they are in bed with Big Pharma. Good luck.
1. unfmlrceilings Member
 Bella, I am glad you are feeling better after making some important life changes. Unfortunately RA can not be cured by anything including diet and exercise. Joint damage continues even if you are feeling your best and medications are important to slow disease progression and joint damage. I have severe seropositive RA, and despite being strictly vegan I still ended up in the hospital when my RA affected my chest after having to stop medications for 2 months due to insurance issues. Diet and exercise are important, but suggesting they cure chronic disease can be dangerous. Everyone has different responses to diet as well as medications due to genetics, and everyone should work with their rheumatologist to try and find a treatment that works best for them.
bsmartt Member
Since we're talking self esteem I was wondering if any else was experiencing hair loss with humira? It's been an ongoing issue since diagnosis and medications but has reached the point of my dermatologist sending me to a specialist. Just wondering if any one else is having a similar experience? Thanks 😀
hwb0w4 Member
About 6 years ago, I was in bad RD shape, so I was put on 40 mg. of pred. That is the most that I had been on. Yes, I had moon face, perhaps not full, but even so. I always looked younger than my age and I still have long hair. So, my hair covered the side of my cheeks. I also used medium blush. Abdomen extension was another fun symptom. Every week it seemed, I'd gain another inch. Fear had set in. At the end point, I was 146 lbs. and a size 16. Was never that high before. Then hair-loss! That was the best but it made me very sad. The folic acid didn't help much, so I also used volumizer hair shampoo or conditioner or wore a kerchief. I didn't cry about these new additions but I was sad and didn't leave home more than twice a week. I wore sunglasses. Some would not recognize me. I'm doing better now on different meds(down to 4 mgs. pred), 124 lbs., and have gained my hair back. Not all, but it will do. Thanks for the good topic Nan. Our self-image is important after all.