When I was first diagnosed 4 months ago with PMR/GCA my family and friends were so concerned- calling or texting. Promised to stop by but never did and now I barely hear from them . Sometimes I get a text saying. Even though I haven’t called or reached out I still am thinking of you! I am a total giver and have always been there for people . Sending food , stopping by, call to see if I can do anything . Am I just being too sensitive? I am a little emotional but it does hurt. . Acquaintances have reached out more . After me having to wish them a Happy Thanksgiving or a Merry Christmas it would be nice if they thought of me first. Sorry just needed to vent here to this amazing group!
Friend support : When I was first diagnosed... - PMRGCAuk
Friend support
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Bro-
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DorsetLadyPMRGCAuk volunteer
Hi,
Well there are givers and takers in this world........the trouble sometimes is that givers (like you) expect everyone to be the same.....they’re not!
Your friends and family probably don’t realise how much you are hurting, as you say you’ve always been the giver. They may think that if you are unwell then it’s sensible to stay away...but a phone call would be nice.
You may be more sensitive than prior to your illness, but that’s understandable - we understand - your family does not.
And never be reticent about venting on here - many have done it before, and many will do in future....
....sending virtual hugs and good wishes 🌸
Thank you! Hugs and best wishes to you too!💕
Just add. I too had a similar journey as Mrs Nails and cancer everyone commiserates with but GCA and PMR no.....
Many times, the people who we are closest to have a really hard time coming to the reality of what's happening to someone who was always the mover and the shaker, the giver and the doer. They just can't come to terms with this incarnation of you. They don't know what to say, how to act, what to do.
And the pandemic doesn't help.
So I suggest that instead of waiting to be called, call them. Ask after them and their family. Recount memories of good times shared. If there's something they can do for you, give them an assignment. They very well might be relieved and grateful for you to take the lead.
Because the truth is that you are still the mover and the shaker, even if you don't think so.
This is great advice! Thank you and yes I agree the pandemic doesn’t help. People are dealing with their own issues
As a family member of someone with PMR I can only agree with your comment and some of those reflected by others. My family member is a "coper", independent, and does not want to be defined by her condition - qualities which I respect and are much needed when coping with a chronic condition. I do ask how she is and get a brief response but if I ask too many questions it is taken as interference. Offers of practical help are generally turned down. Arranging fun or "time out" activities is difficult due to the physical limitations that PMR presents combined with the constraints of Covid. Trying to be supportive by pointing out the same positive things and the same affirmative comments, e.g. when able to reduce her meds or achieving a simple daily task, has limited effect and sounds banal after a while, so conversations become stilted. Most givers are also doers - if a friend or family is a doer and a giver but their attempts are regularly rejected then they may feel inadequate and fearful of doing or saying the wrong thing. Generally I think family and friends want to be supportive but don't know how.
I wouldn't be turning down any offers of practical help!!!!
Hi Bro - l can completely empathise & concur with you on this subject, l wrote a Post on this sometime ago, which l will forward to you but in the meantime
1. people just don’t ‘get’ ie understand PMR/GCA - they think it’s a course of tablets & you’ll be ‘cured’ they don’t comprehend we’re in it for the long haul!
2. If you are the ‘Giver’ - Hello! A lot of Us on here, are that person......
Suddenly the ‘Takers’ just don’t understand & feel like they have been let down - with comments like ‘aren’t you better yet?’ I’m Nine Years into this seemingly never ending journey & l’ve written a few Posts on it!...
I’ll root out the Post & let you have a read.
Kind Regards
MrsN 🌺
Bro- This is My Post - l’ve left it as it was written, which is a couple of years ago as it would be too hard to change ‘where l’m up to now!’ It’s very much my thoughts at the time l wrote it.......
PMR v Cancer?
When I was first diagnosed with PMR (2011/12) I worked in Admin/Reception in an NHS Hospital & one of the doctors said to me she'd rather be diagnosed with Cancer than an Autoimmune Disease!
Well...... l was absolutely shocked at how she could say such a thing but here I am seven almost eight years later, still suffering from PMR & the side effects of the steroids but during that time l have also been diagnosed & treated for an aggressive, multi focal, triple negative breast cancer.
Following a Mastectomy in 2015 & a Course of Chemotherapy that Cancer has been 'beaten' l do however, still have an unknown outcome because of the type of cancer I've had, as it has a nasty habit of reoccurring.
During Chemotherapy I was advised & was able to reduce my Prednisolone by 1mg per month, ultimately getting down to the magical 5mg where my GP & my Rheumatologist breathed a collective sigh of relief as I had been as high as 30/20/15mg Weekly Courses on several occasions following a flare(s) then trying to reduce again from 15mg by various methods, but you all know that story only too well!....
When I lost my hair during the Chemo l also lost my chubby, round face as l reduced the Prednisolone.
When you have Chemo they give you another steroid called Dexamethasone to help prevent any allergic reaction to the drugs & that always made me extremely excitable, very bright n bubbly and full of energy, that was however only for three days at each cycle of chemo & a couple of days afterwards until it was out of my system.
Unfortunately, as the PMR started to flare again, it was hard to distinguish what was true PMR & what were side effects of the chemo! I'm now back at 7mg and I'm feeling well again but a few days ago l caught sight of an unwanted but familiar reflection in the mirror, the chubby round face is back so l now think it's time to return to the Rheumatologist & consider where we go from here?
I was previously on Methotrexate which of course had to be stopped for my Surgery & Chemotherapy.
So, lying here in the middle of the night I'm reflecting on what my doctor friend said. Which is worse? Why did I get both? Who really knows?. . . . .
The one thing l can tell you for sure is, I never got a Get Well Card or a Bunch of Flowers 💐 when diagnosed with PMR but Breast Cancer ~ my house looked like a Florists Shop & the Postman thought Christmas had come early with the increased deliveries of cards & gifts! Interesting, eh?......
But, people understand Cancer, they know someone or have experienced it themselves, there’s also the ‘There but for the Grace of God’.......
I’m guessing l wrote this in October 2016 & even now it still baffles me but there is also another thing that’s happens as a result of BC - some people simply ‘disappear’ from your life, the hospital & the leaflets warn you about this & there is most definitely a case of you’ll find out who your friends are!......
MrsN

Thank you for sharing this. What a great read! It’s so true the people who reached out to me were the ones familiar with autoimmune disease. I’m sorry for all you have gone through. 🙏🏻
Thank you so much for this. It is such a tremendous help to know that other people feel just the same about drifting friends as I do. It has made me feel so much better and hopefully more accepting of the situation.
I just remembered the post when l was reading Bro’s Post so l thought it might benefit others.
All The Very Best for 2021 🥂
Thank you for reposting that so we can all read it. Reflecting on what we have been through I think makes us stronger and gives us more empathy with others at the beginning of their journey. I made the cancer journey many years ago but I couldn’t have coped mentally with pmr too at that time. Good for you to share with us what must have been a very difficult and painful time for yourself and your family.
Thanks Mossie
I pretty much took it on the chin as l was more worried about the Boys & my Husband, funny the PMR suddenly just took a back seat & settled somewhat while l had Chemo but unfortunately that didn’t last....
But as l say ‘I’m Still Standing’ 😘
All The Best for 2021 🥂
MrsN
Very well said MrsNails! I am sorry you had to go through cancer and sorry too that you are still going through PMR. I totally agree that people just can't relate to PMR because they don't know about it and as has been mentioned many times, there are no real outward signs of PMR on our good days! Love the suggestion to Bro to be the one to reach out to others especially since that has been his personality all along! Some are givers and some are receivers. You're a giver Bro and that's a wonderful thing!
Always a good reply from you. Hope you are ok.
Hi Joan
I’m not too bad, hope you are doing well? I was in great form Christmas Eve/Day but been a bit below par since but nothing to concern myself about.
We’re planning on Dressing for Dinner tonight & one of our Sons is organising a Family Quiz though l often don’t make it to Midnight 🕛
We will catch up with our youngest son at 11pm as they live in France 🥂
All The Very Best for 2021 🙏🏼
Keep Safe & Well
Angela x
Our youngest is in Melbourne so just going into new year. We should be with him but it was not to be of course
All the best to you. Keep well and safe xx
PMRproAmbassador
Sometimes you are better just leaving them to themselves ...
My best friend when my daughters were small in Germany is having really rubbish time at present - her husband fell down the stairs about 6 weeks ago and broke his neck. He is tetraplegic with only a small return of sensation and movement in his right arm so far, Not promising. She is inundated with phone calls - he knows a LOT of people and they have lived there for over 45 years. But they all are being optimistic (they think), saying "It'll be alright ..." and not wanting to listen to her hurt. Our other best friend can't "do" bad news of any sort and just switches off - I started to tell her about my OH and his illness and it was more important to her to go and make a cup of tea. It wasn't a phone call, it was chat on FB so she could.
You will find the ones who are worth it. But for understanding - you need someone who has walked the walk.
So true! My sister just called me and said . Wow I didn’t know you were still sick and went on and on about herself! I chose to just listen 😠
And I think I have problems?!!😟 I'm ashamed of myself.
Oh no Constance, never feel that. 🌹
Best wishes for 2021 xxx
Hi Terri, hope life is treating you better at the end of this unbelievable year. You've certainly had a lot to put up with.
Nice to keep in touch with old friends. Have a much better 2021.
C. 💐🍾🍸🍸🍸💥🍀🍀
Thank you Constance, it’s always nice to speak to you.
The New Year starts as the old one ends but getting on with it as usual. Plenty of support. Poor hubby still bedridden since the 19/12 and now got a UTI as well.
At least we’re safe in our home 🏡.
Keep safe Constance. Much love to you both. 🌹xxxx
And to you both. Hugs xxxx
Oh completely get where you're coming from. My closest are great having seen the effects of this illness however there's a few people around me that clearly don't understand.
What I realised is that everyone 'gets' cancer, a broken leg, etc etc but few understand chronic invisible auto immune things. Don't waste your time on those not worth it.
My advice is to just ask for help, don't wait for offers. The right ones will come through for you.
I agree you should call. I have felt the same. Why no calls to me? Seems I always have to initiate. I find that after a How Are You? They want to move on to another topic. And frankly, I am sick of talking about my situation. So I move the conversation to more enjoyable topics... new baby, funny cat story, great movie we just watched on tv. All the best. 2021 has to be better!
Yes that’s what I’ve been trying to do and I guess I portray I’m ok because I don’t want to burden them with my problems . So they assume I’m doing well - yes 2021 has to be better🙏🏻
So sad to hear your story. A close acquaintance of mine messaged me some months ago, asking how I was doing. I told her as briefly as I could and not in a self-pitying way that I was 'still taking the pills' and had now been diagnosed with inflammation in the arteries ( I thought large vessel vasculitis would be too much for her) and haven't heard from her since. PMR and Prednisolone can play havoc with the emotions in some people. I well remember when even a sad advert on TV would result in struggling to hold back tears.
It's early days for you and you're probably still trying to come to terms with your condition. Stay strong and concentrate on you.
There's definitely a running theme here that even I hadn't considered. All the comments here ring so true with myself also. I've supported 5 friends and 2 relatives through cancer over past 10yrs and yet during past 2years of my PMR, only 2 people have shown what felt like a genuine concern for my well being. People ask how you are but after a few times of being told that actually I'm still struggling...they switch off and don't want to know......so I start to just say, "I'm ok." Feels unfair but the reality is that I'm the only one who's really responsible for my health and wellbeing and if I need help I'll ask for it now rather than wait for offers that simply aren't going to come! This community however provides a level of understanding, empathy and support that more than makes up for the lack of it from friends and family. My expectations??........ Have none....but hope for the best! 🙂🙂
You're not being too sensitive. I think this happens to us all from time to time and it does hurt. I've found that because PMR doesn't always display obvious symptoms like, say, a broken leg or arm then some people may think that we're perfectly well when we're really hurting and would just like a kind word, or offer of help. Gentle hugs from Cyprus, and hope you have a HappierNew Year xx
Happy New Year !
Your story is familiar Bro-. Friends and family saw me struggling to even walk in the month before diagnosis and Prednisolone at the beginning of this year, so lots of sympathy and visits. The Pred did its magic instantly, mobility wise anyway, and I have appeared normal ever since. Nobody ever asks now about my welfare and it is assumed that I am my energetic old self again, which to some extent I am, but with good bit less energy. I have been lucky so far.
I've had comments like 'Of course, you had (note HAD) that PMR thing in the spring'. It's a case of, if you look fine then you must be fine. I probably had that attitude too before falling foul of PMR!
I have experienced the same as you. When they do call and ask how I am I tend to say"I'm good" Some will ask "what is it you have" and that's it. Very disheartening. No one I know has ever heard of PMR. I wish you well dear heart.
Having read all the comments this morning, I feel it's about time we all gave ourselves a big pat on the back (figuratively for some of you at the moment-sorry 😫, it will get better). We deserve it.
Nobody truly knows or understands the physical and mental effects of PMR/GCA except those experiencing it. Personally, I have to admit to playing the martyr from time to time, struggling on with lots of oohs! and ouches! expecting my husband (who has been wonderful) to just KNOW that I'm having difficulties. When I get tearful over small things why doesn't he REALISE it's the PMR for goodness sake?
It does hurt when people ask, 'How are you?" and then, before you can draw breath, go on to tell you about the exciting things they are just off to do. Might I do that if our roles were reversed? I hope not. Other than hanging a notice around our necks with a list of effects of our disease, there's really not a lot we can do. What does unfailingly work is coming here where we know that we can ask any question and be heard as opposed to listened to, supported, pointed in the right direction and feel the warmth of a group of people who will never give up on us.
Here's to a new year that will bring everything or even one thing we wish for: we mustn't be greedy but we can be grateful. There'll be ups and downs, maybe one step forward-two steps back, but there's always light at the end of every tunnel.
All the very best to everyone. I raise a glass to you all but due to Leflunomide that is filled with water....damn! xxx
I so understand how you feel. I have an old friend who has known me for years. She believes that homeopathy and good diet and exercise will cure anything. I lent her the Kate Gilbert book because I thought it would help her understand what I was going through, but she gave it back without reading it and although she always brings me little gifts of flowers or home made cake, she somehow implies that it's my fault that I have aches and pains and chronic tiredness. My fault that I eat too much sugar, dont go for long walks in the fresh air, dont use my exercise bike. Even my own family, lovely as they are, don't really understand, and the long term effect is that I don't complain much because I don't want to be seen as an attention seeker or a moaning Minnie, which reinforces their view that I'm actually OK. My successes in trying to live a normal life are seen as proof that I'm getting better.
So you just can't win. I'm thinking more and more that no one could understand unless they have 'walked in my shoes ', which applies to other life altering conditions like bereavement for instance. Its just that if you haven't experienced something yourself its hard to imagine what it feels like for someone else, and easier to avoid feeling awkward by ignoring it. Ive been guilty of that myself in the past.
People often do ring me to ask how I am, and quickly go on to tell me all about themselves which I can now recognise as helping them to cope with their own problems. That makes me feel I'm doing some good anyway.
So nice to belong to a PMR community who really do 'understand where I'm coming from '! Pris.
Thank you for this read! If one more person tells me to meditate, do yoga, go for walks I’m going to scream- and yes I have those friends who think homeopathy will cure me. I do believe when I’m up to it that all that will help but right now I’m not ready. I’m lucky to take a shower and cook dinner on a good day! I’m not an attention seeker or complainer either. Only to my husband who has been my number one supporter. . I guess because I come across STRONG they think I’m ok - this was helpful. We are all in this together and the support is amazing 🙏🏻
Many of us have been there/are there, got the T shirt. From reading posts most of us have been 'copers' usually able to battle on and 'beat' disadvantages, which of course does not work with pmr/gca, so that will flummox those that know us pre pmr/gca. Pred certainly heightened my colour, so by the time you add in 'you do look well' the likelihood of others understanding is further reduced.
There is no easy answer but most of what is written here is helpful. It's another layer of acceptance we have to adjust to and realise we are not giving in but doing our best to manage our situation.
I wish you well and think it is certainly giving the advice from Goodgrief a whirl. The mental side of all this is far bigger than you think to start with!
The trouble is that it takes a lot of physical and mental energy to initiate contact - the 'fake it to make it' of I'm fine' sometimes works when the conversation goes well and you feel replenished and actually feeling 'fine', but if it's someone who really doesn't listen you may end up running on empty and a 'why did I bother' fresh layer of resentment.
After a year or two of PMR I decided I would cull my list of friends, sounds harsh but, like you and so many of us here, I was the one who listened to their woes and tried to help - emotional vampires are not the best fellow-travellers for PMR! I have a daughter who really understands, and is practical and thoughtful and visits frequently, and one friend I've known since he was 7 years old but who had dropped off the radar. He and his wife stepped up in a spectacular way when I had a hospital stay and we've formed a very strong bond of give-and-take. And one other, who is as mad as hatter, and makes me laugh. So have a think about whether you have one or two people with whom you can just be yourself. You don't have to be on the phone every day, the amount of happiness found in true friendship isn't equal to time spent but the quality of a two-way relationship. You might also be surprised by one of the acquaintances you mention who becomes a welcome friend.
Wishing you well, Bro- and it's a bit of a see-saw of emotions at first, pred can play havoc with your box of tissues! Happy New Year 🌈🌹
PMR is such a strange condition - I did not look unwell and friends and family found that hard I think. I have always rushed around doing things for people and they had come to expect it I think so I had to learn to not do things and to ask for help which was not always easy !
Hi Bro- it does happen I’m afraid and some just bury their head in the sand because the don’t know how to deal with it. Just hope it doesn’t happen to them.
There’s always someone on here to lean on, for sure.
Best wishes for 2021 🌹
Remember the pleasure of giving is more important than that of the receiver. PMR, as other long time illnesses can be a lonely road. For 2 years now, when my daughter who loves me calls in the morning and the evening each day to see how I feel, I tell her, "I'm fine." Why have her feel "bad" with something she can do nothing about. I answer the same way to others who enquire after my health. I keep the complaints for my doctor. Try to dwell on all the positives in your life. If you start to feel "poor me" you will put stress on your body, and that is not a good thing. Hope your feeling down is a short temporary thing. Keep smiling ! 
I totally understand how you feel and have had a similar journey. It's because PMR/GCA is not widely understood - more awareness needs to happen to raise its profile and particularly the amount of pain, mental and physical impact it has and how it changes lives. We can all support the charity with this work . only once it becomes more mainstream will people truly "get it" happy new year everyone !
Bro, I am so glad that you posted. It allowed so many responses that I needed to read. I feel it most and have been depressed since November. My house has been the gathering place with no one lifting a finger to help. Family lives a distance so it means sleepovers and many meals. Since I was diagnosed with GCA in 8/19, I have put a stop to this and have suggested that I can handle one or two with help. My kids are great, they live nearby and my brother has come often. He is low maintenance and I enjoy his visits. The rest, nieces, nephews etc. nothing. I am hurt since I am talking about adults, single and in their 40s. OK I feel better, I've vented. You are not alone and neither am I. We have this wonderful group! Be well, be safe. Jean
This is where I got the most support when first diagnosed. Doctors don't tend to listen they just want to rush you off steroids. Friends don't understand because outwardly we look fine and we can complete most tasks albeit with difficulty sometimes, then the comments start 'oh she showing her age' which doesn't help. I get asked to do things for people and do it, although I know I shouldn't and sometimes think they are healthier than me, and they know I have this illness , but life goes on.
Really empathise with you on this one. My family are quite caring but illness is something they steer clear of, maybe anxious that strong healthy tenacious old gran can’t possibly have a disabling illness, especially as my patent answer is “I’m fine!” A close girl friend is the only person I share with as she has her problems too so we don’t feel we are burdening each other just having a good old girlie moan. My husband says very little about it as he too is scared I may change from my strong reliable, never giving up self to an ill whimp who may need care of some sort. Don’t get me wrong, he is caring and considerate but again doesn’t do illness. He is constantly suffering with sinusitis and hardly ever complains. So I think we all cope with it in our own way and you being the caring and giving sort reap far more benefit from your attitude than uncaring people who tend to “live their illness” and wallow. We all care about you on the forum and know the sort of thing you are going through. Please have a good moan anytime it clears it out and makes you feel so much better.
Have a very happy and hopefully healthier New Year.
God bless.
GrannyJane x
Better times for 2021. However, you do remember that people are coping with COVID and are likely worried about spreading the germs. In our area, we certainly stay well away from our neighbours and friends, so please don't take it too badly. Also, perhaps they just don't realize what our health is all about. Hang in there, and just enjoy the folks that reach out.
I appreciate all of the replies, and just have one thought to add. I think it has more to do with the nature of PMR being chronic. My friends/relatives with chronic issues like fibromyalgia tend to not talk about it much and work at learning to live well with it. So while I may ask about their conditions, I take my cue from them. Often their response is "I'm doing pretty well." I find that I respond the same way rather than saying I'm tired or in low level pain or whatever every time. It's hard to understand chronic issues...I really didn't until I experienced PMR. My own mother had GCA and I have to admit I had no idea what she was really dealing with. I saw her round face from 60 mgs. of prednisone, and I knew it was difficult for her to sleep, but had no idea of the daily grind. The best to you all and thank you for your commitment to this site. Your questions and responses have helped me immeasurably.
As a net "giver" I was looking forward to doing some "receiving" when I was first diagnosed with PMR, and as many of you have said, so many people were initially very supportive, but most are not now really able to offer long term understanding. Well, guess what - I have gone back to being a "giver" (in the form of counselling) and find it very helpful for myself as well as for (I hope!) others. It does help to keep a sense of perspective and prevent me from being too introspective. Someone also said "Look outwards (that is to the world around you) and be distressed, look inwards and be depressed, look up to God (however you see him) and be refreshed". How wonderful it is to have this supportive forum; I don't contribute that much but I know that you are all there.
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