People don't recognize me. I've spent most of the last 16 months on 20 or more mg of pred.-I look very very different. Due to a recent flare, I am back up to 25.
I've gained 35 pounds, and I swear five are in my face...I avoid my reflection -----allllllllllll the time----- It has become more difficult lately to remain philosophical about the temporary nature of these physical changes. Temporary is lasting a really long time. I read a great book to my grand-daughter called, "I like Myself, "and cried. It's a message of self-acceptance and rejection of the negative opinions/judgments of others. I had a lady say, You are really puffy. To which I replied, yes. It's rough and a side effect of steroids. She paused a second and stated, "It's hard for attractive people to get ugly."
I was so flabbergasted and surprised that, I laughed. Inwardly, I thought about her laying in bed that night and hating herself for having said it to me.
I know we are not -our outsides----- Can we talk about this?
I'm wondering if it would be 'okay' to take a sabbatical from most of my life, dig in, hide away; until I recognize myself in the mirror again. Do you think this is unhealthy? Anyone ever feel like this?
Thanks in advance for your thoughts and empathy. I'm looking forward to the encouragement and advice as to what we can do to gracefully navigate another dimension of chronic health issues.
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Blurry62
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Dear Blurry, I really understand what you are saying. I don’t recognise my face anymore. It’s not my own! And folks I knew before my illness walk past me in shops as they don’t know it’s me. I’ve gained 28 pounds on a small frame and have a moon face. I have days when I want to hide away but we can’t put our lives on hold. I’ve had PMR since 2014 and just tapered to 10.5 mg after being on 16mg for a year. It’s not easy but I tell myself that life is short and although our bodies change, our spirits are still us. We need to be kind and accepting of ourselves and treat each day as a new day. I wish you well.
We all know , and regularly advise each other , after being hit by the, " slings and arrows of outrageous fortune" , and hopelessly tactless comments of idiots , whom , deserve slowly pulverising in a food processor , that we should ignore the change and comments , but it is hard.
Believe it or not , some of us suffer the other way , rather than getting the weight gain , moon face and curly hair , we slowly begin to look like slowly deteriorating skeletons with the receeding hair line of Count Dracula or Ray Reardon.
Oddly , we receive the condemnation that we are probably doing this to ourselves by trying to stay stick thin , we are accused of anorexia , or told not to , " walk over that grate you'll fall through it " , and " eat a proper meal , if the wind changes you'll blow away".
You will think us skinnies crazy , but I bet I'm not the only one who has read about weight gain or moon faces and thought , " My goodness , why can't I have a moon face and curly hair."
I suppose having a Chronic condition that affects your appearance is no different really than dealing with the way our appearance changes throughout life , the grass is always greener , boobs are always bigger or smaller , hair is always glossier , muscles bigger and legs longer on the other side.
I did have a Moonface for a few months when they tried a steroid combo last year while trying to treat two of my conditions at once. Try going from Skeletor to the Face on Dr. Who overnight and looking in the mirror next morning if you want a sudden shock at how illness changes your appearance. Talk about a comedy double take that Laurel and Hardy would have been proud of!
I wasn't really that interested in my appearance even before being ill , so maybe that helped.
I know that was partly because I could see the strain and pain , and insults and jealousy , that this sort of thing caused in people around me , and so , I made a concerted effort from an early age , not to fall victim to all the hype and body negativity that I saw cause such harm in others. In some ways I was more prepared and found accepting these things easier than others do , but I can also empathise because seeing how it affects others , not just the sick , but healthy too and it has always made me very sad.
I do say to people on the forum regularly though , "You are still You" , because the real You doesn't change , it's just what you do or how you look that does , and this is temporary.
The people who really care about you , and know you, notice the way your looks have changed less than they do the way you feel about it.
Having a Chronic condition also helps you discover who you real friends are on lots of levels , and the type of people who do draw attention to your changes in a negative way are better not to be around. A Silver Lining of PMR , you get to dump the chaff and keep the wheat and have a good excuse to do it.
I also say , "Love Your Moonface , or Your Skull head!! " It's a badge of honour showing the world that you , and your steroids are fighting hard together to get you through this illness as a Strong , Beautiful and More Serene Survivor on the other side.
Accept your cuddle costume , while eating healthily , it may be a bigger you but can be stopped from getting too Michelin and more Marilyn with keeping an eye on your diet .
Or , if you are like me , don't forget your jumpers , if for no other reason than it might stop you falling down that drain!!
Don't avoid your reflection , just don't judge yourself too harshly .
Do , however , help cope with the stupid comments of the ignorant and irrelevant by giving them a little smile while stating one of your favourite versions of a retaliatory insult in your head.
One of my personal favourites is to paraphrase Churchill at a dinner party....
" Yes , but after PMR I wont look like this anymore , as you character my dear will always be ugly "
Or , " Just goes to show you can't tell things from appearances , I don't look ill , you don't look stupid!"
The other silver lining of Chronic Illness , Serenity and Patience!
You need to protect yourself from the pain caused by stress so end up learning lots of tactics to keep calm and count to ten before reacting to the World , so after you recover you are far more capable of dealing with life's misfortunes than you were before.
This reply probably isn't very practically helpful to you , or anyone else , but I hope it might help you raise a smile , even towards your reflection , and that in itself might make getting through the changes a little easier , and make you feel a little stronger.
Thanks blearyeyed, my favourite forum philosopher. Thanks for taking time for your gentle and thoughtful posts. Yes, I look like a hamster at present but- you know- "so what" I think to myself. Just happy to be alive and surviving.
I am putting these quotes on my fridge. I wouldn't likely say them out loud to anybody but, will recite them in my head and feel ....goooood..... Thank you for the big smile. You 're absolutley helpful.
I enjoy the pleasure of being silent but deadly , I learnt it from my Grandmother .
My friends and family recognise the "serenity smile" now , and then usually confuse my unknowing victim by rolling around laughing for no apparent reason.
Maybe we should start fighting wars like this too!
When I need to cheer myself up about my round, pudgy face, I look back at a post Kate Gilbert wrote a couple of years back - have a look at healthunlocked.com/pmrgcauk... . It gives me hope!
I know it's hard to remember when you're feeling miserable about your appearance but the people who really care about you won't see your moon-face - they'll just see you. And all the others don't matter.
I don't think it's a case of being ugly, it's a case of not being you, you've been living with that image of yourself for years.
It does take time to adjust to a new face in the mirror, as if aging wasn't enough! For quite a while I would just stare at the reflection that was not me, trying to accept it. I am getting used to the fact that it changes with pred dose and thinking which face will I have today, and it can effect how I feel for the day, but not as much as it did.
It is often said here that the first major step to overcome with PMR is acceptance. Accepting your change in appearence is part of this.
Saying that, you do seem to know some rude and unthinking people!
Hi Blurry, I can really relate to what you said. I have only been on steroids for 2 months, I’ve always been hyperactive and skinny, and I have only put weight on my face. And my daughters tell me it has made me look younger as frankly I looked gaunt before, BUT it isn’t MY face when I feel it or look in a mirror (which I rarely do) and that is so weird and upsetting. I suppose we get used to how we look and it’s just disorientating. A rather mean friend (friend?) did laugh and say I looked like a hamster last week, and I can’t pretend I wasn’t wounded by that, but he is surely not a very happy person to say something so tactless. I hardly sleep now, I wake up with lots of negative thoughts and then I get up and tackle each day and have to remind myself that this will eventually pass and I will be a better person, a nicer more thoughtful and kinder person because I have lived through this challenge. I’m a college nurse and when I get back to work I’m sure I will be more mindful of what it’s like for students with chronic illnesses. And hidden disabilities. But the moonface is a pain for sure. And not feeling you recognise yourself is strange. And some people are mean. And some are just thoughtless. I think it’s worth having a response ready, and I find saying, ouch, that was a bit hurtful, the best and most honest thing. It’s amusing if nothing else. 😊
I think saying "OUCH" would work for me. Hopefuly it won't happen again though. While I don't want anyone to feel badly about the face and body changes, It's easier to work through with other people who get it-- work on the emotional/mental stuff "together."
I might be crazy,😏😟, but could the expression "it's hard for ............" not also be a compliment? Meaning "you are still attractive, it's hard to make an attractive lady ugly".
You are, and always will be YOU - whatever happens. Be proud of what you and are, not whatever other people may think.
I have a friend who is massive but she is so attractive and helpful/cheerful she always cheers me up.
I hear what you're saying but, she wasn't meaning it as a compliment. I had commented that the moon face and weight/bloating was rough to deal with on top of all the GCA/pred symptoms....that's when she said matter of factly, "it's hard for attractive people to get ugly."
I guess the compliment could be...."In my opinion, you used to be attractive." ( There's a reasonably decent looking woman in there somewhere. ) LOL
After initial horror of the physical changes I decided to something about it. If you can afford a small amount of spending money can get your hair restyled to suit your face. Experiment with a little make up. Maybe buy a couple of outfits. My moonface is gone now ( it will go) but as a result I have gone from someone who was sloppy about my appearance to some one who makes a bit more effort with what I have. And go out and enjoy life. Beauty is inside but nothing wrong with doing up the outside that can be fun too. As someone else says about a big friend, one of the most vivacious young women I worked with was a large young women who wore outrageous outfits and had a big personality to match.
Unfortunately , those sorts of people , if they don't know what you have got , or, if you have anything at all , will make those comments no matter what!
The only time they occasionally have to choke on their own comments is when someone informs them that they have just said that to someone with a chronic illness.
It won't stop them for more than a moment before they move onto the next victim that they think they can get away with it on.
I don't think it matters though what type of illness that someone is suffering from , or if you're not suffering from anything at all , words like that hurt everybody equally.
In fact , it's people with " invisible" conditions that usually get the brunt of many insults about their appearance because people assume they are healthy.
Sometimes I feel more sorry for the physically healthy than those with chronic illness too when it comes to body negative comments .
They don't have a comeback and start to judge themselves far too harshly .
It becomes a judgement, not just of their appearance , but their character in the hearts of the Healthy , or " Normals" .
They might not have weakening tiredness , but equally , they haven't built up the armour to cope with it that you learn to wear at all times with Chronic illness.
It's those sorts of insults that can cause mental and physical issues in the young and healthy that can last a lifetime.
I understand exactly how you feel, I look in the mirror and don't recognise myself after 3 months on Pred. Hamster doesn't come into it! Fatigue is chronic, sweats and hot flushes horrible.
On a positive note I am 62 , no wrinkles, cuddly for my granddaughter, my husband still has his rose tinted glasses on when he looks at me, and I am almost pain free after 5 years.
I have days when the effort to go out is all too much so I don't, but after a couple of days holed up I feel a bit better and get myself going again.
Be kind to yourself even if others are not. Have your hair done, put a bit of lipstick on, tell yourself you're still you and that things will get better slowly.
Timely post for me! I always end up worse when I have to sit in the hairdresser's chair with that mirror opposite me in that horrible bright light like I did yesterday. I look at that person and I just end up depressed. I want to tell everyone it's not me. I can feel it this morning, this panic to change it, but I can't! Coupled with the horendous fatigue from sitting there all that time. I asked myself that question last night, where on earth am I!!? Then I panic and tell myself I could be worse just sometimes it doesn't help!!!
I get the where am.i who am I panic in the night sometimes. I don't seem to get it as much now. It was terrible during the menopause. My sister had to get out if the house at 3am....hubby in tow walking the streets to calm down. Hormones are a nuisance wherever they start from.
Oh really? I get it, i seem to be very anxious and that waking up with this almost panic feeling, wheres this all going to end. Trying to talk myself back to sanity!!
Absolutely. It's anxiety. There was a spot over the airing cupboard that scared me when I woke in the night for some reason. I just repeated my name and that I was ok until I calmed down.
There are some benefits to being really near sighted because I can't see well enough to notice the wrinkles and when he shows me the cut at the back I can ignore my face.
EXACTLY!!!!! I just hate going but, I do. The irony is, I'm a hair dresser. I know how to do my hair and makeup: I want to do my own..."ME" "MINE" Like all of us here, it's stinky business and a challenge to deal with a drastically altered appearance.
I drive my husband mad cos I won't let him take a photo with me in it. I've ended up in bad humour too many times if I think I look ok, only to have it ruined when I see the pic of the puffy face and neck! It's the fact that it's the pills that have done it, not even life just the pills! It's hard to explain. And yes then I thank God I'm not on an even higher dose - well when I cop myself on and get over the pic!!!
I can`t believe someone could say that, she must have known you have good reason to take steroids!....it`s how you feel not how you look that matters to us all in this battle.....I did have a moon face and gained weight, became pre-diabetic, so lost the weight with sugar and carb reduction....but I don`t feel any better.....
Nothing much more I can add to the above replies - they're all wise and good! I hate the weight I have gained and the moon face but "God grant me the serenity to accept the things I cannot change". Count our blessings, concentrate on the things that really matter, be so grateful we live in the places we do and not in countries where we have to flee for our lives because our homes are being bombed.
And YES - make the most of ourselves as we are, use make up, wear nice clothes and SMILE!!!
Good for you Blurry. I wear lots of bright colours, make up, gorgeous earrings and I'm always getting compliments. Makes me feel good and I find I can forget the weight gain and BIG tummy!
I am with constance13. The woman thinks you are attractive so you could never be ugly. If not then she is worthy of a zap from.my cattle prod. Don't ever hide yourself away because of comments like that. For every 1 hater there are 10s of good, kind people. The only one you would be hurting is yourself by Howard Hughesing. One of the things I looked forward to.as I aged was not giving a sh1t. I have just brought the timetable forward. Hope you feel better soon🌻🌻🌻
I certainly understand what you are saying. I have always been a "big" girl hovering between a uk size 16/18. I had long glossy hair and cheekbones
I have been on Pred for 3+ years now. My hair fell out, my face puffed up, I put on weight and my fat redistributed itself so instead of the pear shape I am now apple!
At first I found this hard to cope with. Funnily enough I was used to the sort of backhand comments like "never mind your body, you still have a pretty face" or unwanted diet advice or "you should get more exercise" or "you should give up.....(add a food group or item of your choice)". I don't know why people think its OK to make comments like that to a bigger person that they wouldn't dare say to a smaller person. So I have coped with this since I was 14 and filled out to a curvy size 14!
So now with my pred/pmr body I have made loads of adjustments. I like to wear bright coloured clothing this hasn't changed but I now tend to avoid waisted styles to not highlight the pred tum. I have had my hair cut short and spiky and stopped colouring it so it looks very modern now with its silvery highlights. I have taught myself new makeup techniques so I can contour my face to create an illusion of my cheekbones still being there
I am reducing to 5mg at the moment and noticed that the face puff is going down a bit. I stopped putting on weight about a year ago. I am treating myself gently.
Fundamentally I am doing this for me not other people. I like me, I like looking after myself as this then helps me to feel good. If I feel good it keeps the " black dog" at bay. I am used to comments but funnily enough the ones I get these days are that "you look so well" (sigh).
Be gentle on yourself, there's no need to conform to the peddled "look" of the retail and beauty industry. We are all individual, embrace your differences, buy the size 24 knickers to fit over the pred tum, does it really matter what a label says. If its comfy, wear it. Love yourself first, then you are able to spread the love to others xxx
Oh sweetheart! We have all been there and are still there from time to time. What a stupid remark that woman made to you, I can only think she was jealous of you, well done for laughing!
My grandson was shivering from the swimming pool and I said “ Come here to your big, fat, warm granny”. He leapt on to my lap and I wrapped him in a towel. We had the longest, bestest cuddle ever. I have felt beautiful ever since. 💝
You are so right Jane! The weight gain and big tummies fade into non-existence when you are cuddling a precious grandchild. I live a wonderful, full life but the highlight of my week is looking after my 17 month granddaughter on a Wednesday I just LOVE it.
I gained a lot of pred weight when I was switched to Medrol and it went to the usual places. I'd gained weight with PMR because I couldn't exercise properly for 5 years and craved carbs (yes, it happens with PMR, not just with pred!). I looked really Cushingoid - it says so on my discharge notes from hospital back then. I hated going to the hairdresser as I couldn't avoid the mirror, even removing my glasses didn't help. I have no long mirrors, just bathroom cabinets - I hated them. My upper arms were enormous, I had to stop wearing some of my shirts as the sleeves were too tight and an aquaintance noticed that one day - I went home and cried.
Then I cut carbs drastically and was switched to a different steroid. Over the following 18 months I lost over 35lbs - and the first places it went were my midriff and my face. It was very slow weight loss but my shape changed quite quickly. Now even the doctors say you wouldn't know I was on pred. If you haven't tried it it is worth a go - you may be surprised. My face is still chubby - like the rest of me - but that's been a life-long problem.
There's empathy here. Thank you. You know what it's like to be me. You have been me...
Except for one thing perhaps? I LOVE carbs. Carbs have been the only thing that tastes normal and delicious. Yup, Carb addict here....... hahaha...grimace.... I'll try to cut back drastically and eat more mindfully.
I know what you mean about carbs tasting normal and comforting and some things ( healthier) tasting odd and unpleasant. This does not go down well with my OH the clever chef. This thing does conspire against us. My family have to catch me to get me in a photo. How sweet that they want me in them. Vanity, vanity, vanity all is vanity.
I have found the physical changes tough to take. At 6.5 my face still isn't back to the old me. Better though. All the fat distribution is just like the rest of PMR.. It goes slowly. I've tried to work with my new look as others have suggested. Really saw my gut in a mirror and started weight watchers. Just lose 2 lbs a month but I'm down 12 lbs. I think I'm looking better. Fat went off my waist. Still need to lose that lower abdominal fat. Think it will go as I reduce pred. We are all in this together. Find kinder friends.😘
Wow that woman was totally inappropriate! I would have told her “Yeah and you should know about ugly “ with a word thrown in that rhymes with witch but starts with a B. Sorry I don’t put up with people like that at my tender age of 61 anymore. Anyone who says crap like that is not nor never will be a Friend so no loss.
I’ve been on just 15 mg now tapered to 14 and my face is puffier and I notice a change in my figure too. I’m watching what subway as much as possible by staying away from bread, pasta , sugar ie desserts , cakes and focusing on lean meats, veggies fruit. Even so, its definitely a challenge and hope at least to just keep weight stable knowing at some point in the future when Im off this Prednisone it will return to normal. I get what you’re going through because our appearance means a lot and you can get really depressed about it.
Don’t get too depressed. We tend to see ourselves as much worse than we really are. Focus on your health - eat healthy, get some exercise and of course the fact we have less pain and can function due to the Prednisone is very important. Before the Prednisone I was in so much pain and depressed by it. Life was nothing but day after day of managing pain with NSAIDS that often didn’t help much. It was really a living hell. But Prednisone gave me my life back albeit the side effects. So look at the positive vs the negative and there are always going to be jerks out there who are witless fools that can’t or won’t appreciate your situation. Their turn will come. Karma bites ass.
Dear Blurry, I totally understand your feeling, as I am in the same position.
From an attractive woman, I have turned into a fat bloated person that even I cannot recognise. I lost most of my once very nice hair as well.
Every day I keep telling myself that one day I will be somewhat better again. Hang in there. My family and friends still love me for who I am. I hope the same counts for you.
I am totally blessed with a supportive husband and family. Husband tells me often that I am beautiful and that this temporary. Friends try to be supportive but, the changes in me are kinda like the elephant in the room ...( NO PUN INTENDED) ....I can tell they feel uncomfortable sometimes. I try to never mention how I feel because I know they would like to say, "Oh, you look pretty normal and good." They can't/do not say that. There's usually silence. One good friend friend did say, "You are not your outsides."
People can be very cruel sometimes, and I don’t think they always realise how much it hurts the recipient, or maybe they are just so insensitive they don’t care. Like your lady, not what I would call her!
I’ve always been statuesque (polite version) and come from a long tine of similar shaped ladies so never really thought about it.
I was a size 16/18 whilst still at school, always taller and bigger than friends but nobody ever commented on it. In fact the only person who ever did have a nasty comment pre steroids was my mother in law - perhaps because she was my MIL or maybe because she was less than 5ft tall, tiny and had an inferiority complex! Apart from one friend of my hubby who said to him (not me!) - “cor I bet your misses can pack a punch - she’s got shoulders like Cassius Clay” ( shows the era). My husband’s retort was, “don’t say that to her, you might find out”. Needless to say he wasn’t invited to the wedding.
All I can say, those broad shoulders have got me through a lot of things in life, so obviously they are needed!
I did put on weight pre diagnosis due to lack of mobility, and a few pounds as well as the moon face once on the Pred - and another rude comment from the Rheumy (who should have known better, but was another MCP).
There are a few photos I’d rather not look at!
Once I got down off my very high doses the weight did go albeit quite slowly and since being off Pred I’ve lost a lot more without really trying. Although two replacement operations which have made me a lot more mobile have helped. I’m now a size 16 - which to many is still ‘big” but not to me - and I haven’t been there since I was probably the age of 16!
As others have said, you are still YOU inside, and I know sometimes that identity feels smothered, but it’s still there, and if you let it, it will still shine through.
True friends may look at you a bit askance if they haven’t seen you for some time, but if they are true friends they will accept the new, temporary you. If they don’t, then maybe they are not true friends.
But sometimes the most difficult person to accept the new you, is you! As the saying goes - “if you don’t love yourself (in a good way, not a celebrity false way) then you can’t expect others to love you.
So don’t hide, your problems will still be there - get out, enjoy life and do the activities you like then you won’t have time to think about the bad things.
Those artists of old knew what true beauty was , and it was people that looked like us.
If those Grand Masters classed beauty in those terms and wanted to paint folks like us in all of our beautiful variety and individuality whom are we mere mortals to argue with them!
We are Survivors , We are Human , We are Beautiful , We Rock!!!!
What a journey you've been on. This gives me courage. Thank you. The responses have been tremendous and wonderful, haven't they? I'm overwhelmed by the support, raw level of sharing and courage these women exemplify.
When I was first diagnosed and prescribed 15mg of prednisone I couldn’t stop eating, I thought about food every waking hour. I mention to my doctor that I was getting depressed because of the weight gain, and my doctor said to me, the steroids make you hungry, it’s what you eat that causes the weight gain.
So I started filling up on water salads and fruit, cut out carbs, and burning off calories by walking gardening and just simply moving more. I lost all that I’d put on within two months. There is light at the end of a very long tunnel. Think positive. Good luck
Yes I know exactly how you feel.I've been on steroids since January for GCA. Started on 60 now on 17.5.have moon face buffalo jump fat neck covered in blood blisters from the steroids. I used to be a model too! I only hope out with dark glasses and scarves roundyou neck. Been asked why my face is so fat and had I overdone the fillers! I haven'the put any weight on body either.Some days just wish I hadn't woken up.On steroids for another year too.I'm do fed up with it all but at least they saved my sight.You just have to keep telling yourself it will all go...eventually but very very hard.Wish you lived near me because I really know how you feel.Keep in touch.
Holy cow! I hear you. I just got sunglasses! haha...come-on..... we have to try to laugh.
I didn't want to take them off in the store and ran into something----incongnitio doesn't always work out....But ya know, I've decided it's okay to shop during low volume times to avoid running into people who I'll either try to avoid: because I don't want to explain what's happened to me--or- because the cringe I feel when they walk right on past without recognizing ME is stressful.
I keep getting GCA flares...on the 4th one.....prednisone and I have are intimately acquainted unfortunately. I do have high hopes though. The doc is on board now--for the first time ever-- with the SDNS taper.
Thank you for writing. You hang in there as well. hug
I do the same shop were people don't know me. Get some tinted glasses I've got them in pink pale and pale blue as the steroids have also thinned my cornea so keep getting very imflamed eyes.My huaband thinks I'm being ridiculous but men just don't understand. Try face shading it does help too.Yes I know it looks like vanity but it's just about not feeling not so selfconscious when you dare venture out. Keep in touch.I find a nice glass of wine helps in the evening!!
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- but that's been a life-long problem. 
How do you know when you are ready to come off steroids completely?
want to compare notes? I can disclose here because you don’t know me!
Emerging from the darkness
GCA and people not understanding
I would be interested to know how you all read this
