I've seen it many times over the last few days, posters being worried they're moaning. I guess I equate that with whining, and I wrestle with the fear myself. What do you suppose the difference is between them? I mean, I've yet to see any post that struck me as being self-pity or unjustified complaint. Why do we think this about ourselves? I think it's partly the idea that I was whining that kept me from telling my doctor about my hands and knees for the last 10 years or so. Clearly the idea was mistaken and unhelpful, but it's still hard for me to come here and say 'OW' when I see so many strong survivors, and people coming through difficulty with grace.
Maybe you all ought to know that this is how I see you, then. If I can tell you, perhaps some day I'll figure out how to tell me, too.
-Azabat
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Azabat
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On first diagnosis I got asked a lot what's wrong now are you still ill etc so it's an in built response to apologise for moaning this is the only place I feel safe to vent xx
Yeah, I'm still figuring that out. I've just had such a complex medical history that I'm afraid people don't want to know anymore, you know? It's why I have my 'happy me' armour that I wear. I'm honestly just getting too tired to carry the stuff around. *wry grin*
Azabat,we were all in your shoes once so if you feel you want to moan then feel free and we do still do moan. This disease is a killer and the things it is does to us and the evil drugs we have to take to keep it tamped down any wonder people moan and i am one of them. This is a safe site and we won't critisise you so speak freely.xxxxx
Good morning Azabat, I have had RA now for 40 plus years and have had all the usual drug treatments, but are now on a 6 week cycle of Anti-TNF infusions of Infliximab for the last 10 years. For years the Rheumatologist that I had firstly was sympathetic, but didn't push for the new medications that were becoming available. Consequently, I struggled for many years, afraid to ask if I could try these new drugs for fear that she knew best. This lady eventually retired and I was passed to a new gentleman. He was marvellous and after seeing him for the first time, pushed for funding to go on the Anti-TNF scheme. I had to fill in a sheet that showed the level of pain and discomfort that I was in for various functions and I suppose I held back because I felt sensitive that I was exaggerating. This Rheumy then told me to show exactly how I felt and if necessary, to extend the markers that I had indicated on this form. Within 3 months I was on Infliximab and it has been wonderful! I have pain and flare-ups, but probably nowhere near the level I would be if I wasn't getting this wonder drug. Anyway, what I do want to point out is because of the way I suppose we are built and our feelings towards others we all tend to hold back at times and do not express our real feeling for fear of being labelled a fraud or something like that. Don't hold back and fight for what you believe to be true and right!
Thanks Dick. I think fear is a huge part of why I don't quite feel safe speaking my truths. I've had umpteen zillion (yes, that's medical terminology) complications in my medical life, and I get tired of having to convince specialists, that yes, I really mean it, and it really sucks. I think I, too, don't want to exaggerate, or want people to simply stop hearing what I say. I've always been the trooper, the resilient one, and the ridiculous optimist. This disease is slowly throttling my optimism, and trooping through just makes me hurt. I see my rheumy in a month, and I'm going to have to tell her exactly how I am, I guess.
If you go into your appointment and be matter of fact then it's helpful for the doctor in
a perfect world. We have emotions connected to our pain center in the brain.... so it's
pretty difficult for the average person to separate the two. Lucky are you if the doctor
asks specifically if you are hurting shoulders to toes so you can say yes or no as the doctor
manipulates the joints. The doctor can hear in your voice (hopefully) the points that seriously
hurt. After that exam, you could talk about other things going on such as fatigue, your life and
how it's affected by pain. It's all pretty important to talk it over during your visit. The doctor
cannot possibly know that you are having issues unless you speak up. You can try to be
matter of fact when you say it. Use every moment of your appointment by reading things
that you jotted down prior to the appointment. Have 3 good points. =) If you cry or feel sad
when you say it, don't worry... doctor heard it all before. So did this forum so talk away. =)
That's an interesting and sensitive question. I too marvel at others on this site. But, as for myself, this is the one place I am able to write unselfconsciously . I believe that is what it exists for, and by writing it as it is, others might be able to identify, and that, in my experience, makes living with RA/RD, a less lonely experience.
In the 'real world', I know I moan, but try not to. I think this is for fear that sympathy of others might wear thin. On the other hand, I want to remind them to take me and my condition seriously.
It depends on the relationship, but.even with my GP and consultant, I tend to start "I know I shouldn't complain, but ...."
There is a part of me that believes I shouldn't, that I am indeed moaning. That same part realises that there are masses of people far worse off than I am. And if I moan a lot, will this "get it off my chest", or will it actually compound my pain. I do keep a gratitude list. Each night before turning out the light, I jot down five things I am grateful for, Prompted by events of the day just ending. for example, last night it was a) friendship with D b) having a small, professional theatre within walking distance. c). My little rescue cat d). My medication e) the gallery which yesterday agreed to take my work.
This evening, it might be this forum, including your thought-provoking question.
Be kind to yourself, write as honestly and as openly as you want to. It is for others to identify with you, not the other way around.
It's a bit early in the morning for me to be writing this. I hope it makes sense and I send you thanks and other good things. Jo x
I feel like I've used up my quota of moaning in real life, and I worry, too that talking about unhappy stuff will keep me focused on it, rather than letting it go. I like the balance of a gratitude list, and I'm working on keeping an updated list of things I like about being me. I need to change how I speak to myself in my head, I think, You made lots of sense, don't worry, and thank you. Bat xx
Good morning Azabat, Welcome to the moaning site. I feel it is important that we are strong and take control of our illness. Part of being strong is to realise that there is no weakness in weeping and feeling how hard it is to deal with fatigue and pain. I have cried many times at my consultant appointments, but that showed the consultant just how bad my condition was and that was acted upon accordingly. I am sure that all the people how show great strength in very adverse conditions have at some point broken down and whinged. It's probably a small part that then gave them strength. As you can see from all the other responders, we all go through the same cycles. I send you a big hug and wish you well.
I feel terribly guilty about weeping. Part of it is knowing that there are other people suffering much more than I, and part of it is that I don't want to distress the people I love. I will try to think of it as simply part of my process, thank you, and thanks for the hug.
Hi Azabat, weeping is crucial. Weeping when you're in pain or feeling vulnerable engenders tenderness and compassion in others especially if you don't try to hide it. Even a small child can sit and hold your hand. Weeping enables us to release emotion and is part of what it means to be a human being. It's healing and cleansing and at the end of a good old weep I always feel lighter and brighter. So
weep away is what I say
In fact make a point of weeping each day
For a good weep a day keeps the black dog at bay
If you can't do each day, then at least once a week
I have only now discovered this site and It's a godsend... Reading about people's journeys amazes me and gives me the strength to carry on. Unless you have the disease it's quite difficult for others to understand even healthcare professionals. I remember asking one of the GPSs I saw last week.. Do you really know what this feels like ? To be in pain all the time and as he was just asking me to await my rheumy appt I thought he doesn't . We get some good ones sometimes but I don't think it's moaning it's just explaining the facts.
In this world on guidelines and points I definitely feel like I am tick box exercise sometimes.
*chuckle* yeah, I get the 'tick box exercise'. I'm lucky in that my gp is awesome and accessible. It's true that I find strength in other people's stories, I just seem to have a double standard about my own. Other people's stories are honest and important and worthy of compassion. Mine is whiny. It's possible I'm a little ridiculous.
I don't really know if my experience is relative or even if I've properly understood your post but at my last appointment I was due to see a Registrar having seen my Rheumy 6 months previously but she was running late so my Rheumy took my appointment. As it had only been 6 months perhaps it was fresher in her memory but her first words to me were "You look better, you've no pain in your face". She was recalling that at my previous visit my OA was unmedicated & it took nearly an hour to deal with that rather than my RD. I was distressed to learn it was the OA causing my pain as I was convinced it was the RD & fearful little or nothing could be done when she explained to me that it was OA so maybe why the previous appointment was memorable. Since then over 4 months my GP has worked hard at getting that pain under control so I guess my face is more relaxed! So, whether you're aware of it or not if your Rheumy is aware of what you look like normally maybe it shouldn't be necessary to oo ahh ouch at appointments lol!
Regarding moaning on site, speaking as a Brit I think we have an inbuilt default to apologise for our behaviour before we relay our feelings particularly so if it's in the negative. I know from living abroad that we are known for our politeness, our excuse me's & thank you's. I was reminded regularly how often I did that without even thinking.... somebody did something for you so you say thank you! But I think that's just a cultural thing & perhaps more obvious to those not brought up here & perhaps it can be perceived as annoying to some but it's the way we're taught from a young age & I don't think I can apologise for that lol! Yes we have a stiff upper lip side to us as well but again it's a cultural thing & not particularly intentional. Oh & please, I do hope nobody takes offence or think I'm inferring people from elsewhere but the UK aren't polite too.
It's a Canadian thing, too. We're notorious for apologizing when someone else bumps into us. I'm lucky in that when I tell my gp I'm in pain he knows it REALLY HURTS. I have a tendency to do stiff upper lip long past the point where it's useful.
Oh my goodness, just stumbled upon this post on my first visit to this forum and am so happy to have found others who feel the same way/understand!
I've had RA for 15 years now and have had a roller-coaster of a journey so far. I can't believe it has taken me so long to feel able to go out and find a community of fellow sufferers but nobody else can really understand how you feel, no matter their good intentions and I'm glad I realise that now! It's all very good being brave and putting on a front but becoming a master of deceit to those around me, I've managed to start deceiving myself.....
I had a consultant appt yesterday and have been feeling really low as I am in flare-up again and have basically been putting myself at the bottom of the pile and almost being in denial about the slowly creeping symptoms. My goodness, how I have been beating myself up about being so tired and unable to summon up the energy or motivation to even unload the dishwasher for example. I've cursed myself for dropping and breaking a mug, ignoring the fact that my hand was sore and grip seriously reduced. I have been so cranky too and my husband had started to put 2 and 2 together but no, I was fine! The night before, I had convinced myself that I was making a lot of the symptoms up and that I am in way better shape than most seeing the doc too, so had talked myself into giving the doc a low-key update.
Thankfully, the new consultant was amazing though and pulled no punches- for whatever reason, he knew how much I was struggling and stopped mid-exam to give me a stern talking to. "This is not the time for bravery but honesty. Now tell me again, does this hurt?" Erm, yes it does actually, a lot. I have no idea what triggered the light-bulb moment but feeling like the doc was understanding me more than myself was a revelation and BAM, I realised that I should really start to be good to myself and start putting myself a bit higher up....
So, I have been doing a lot of soul-searching and asking questions since. Why have I been such an ostrich? Why do I feel the need to put on a brave front to everyone, even those nearest and dearest to me? Why is it easier to ignore things, rather than confront? It turns out that I probably have many issues surrounding my RA but a few things struck me straight away and why your question Azabat, resonated so much......
1. Being diagnosed at 22 yrs of age, whilst at uni, I never wanted to let the RA 'win' or define me in my throes of youth.
2. I was studying to be a dentist and was told by my tutors that I would never be able to become one now and I have wanted to prove everyone wrong ever since.
3. Probably because of the above, I have been fiercely protective of my independence and see asking for help as a weakness.
4. This is a chronic disease but I don't want to be a chronic moaner!
5. I have a young family and a mother's maternal instinct to put her family above her is STRONG!
Anyway, aware that this is now becoming a bit of a 'dump'/ramble so will wrap it up- thank you to all those other posts worrying about 'moaning' as it's good to know that I am not alone. I feel that I have taken a positive step today by seeking support and confronting things- I realise that RA may have to change my way of thinking but it most certainly doesn't change the person that I am and doesn't define me, as I have always feared!
Thanks so much for the response. I think you've put your finger on one of the reasons why I fear I'm whining. I don't want to be defined by my frailties. I've pulled through two strokes in the last 15 years, gut problems, uncontrolled epilepsy, you name it, and I don't WANT RA to define me. I also don't want to be a chronic whiner. I think I'm going to give myself permission to write whatever the heck I feel I need to, here at the very least.
Hi , I see things a bit differently. My doc straight away told me he's not a minded reader, If I say I'm find then he thinks I'm fine and big to say " fine" if I'm in pain . So that sorted that out for me.
I talked to a counsellor initially after diagnosis and I don't mind sharing I felt angry and annoyed and was scared to complain as my docs moved quickly to help me. But the counsellor said why did I think it was " unworthy" to complain and wasnt I in pain therefore actually just staying a fact and expressing my feelings. That I should not feel " ashamed" of moaning as I would help me through the next stage of my recovery to the thing I have always found most difficult, acceptance, that I have an illness and am upset about it.
So yes on here I tell people . I did and still do have the downside that some friends really do not want to know about my illness but talk about handbags instead! But real ones do and they will listen. So people here do understand and some friends and family do, but the ones that don't , i do fake smile !!!!
So you can gauge where and when I think to download your thoughts and feelings , but the days I don't want to I still do go into my "cave." I am aware of that but it is my way of coping, but others days posting or talking is great . I found my NRAS helpline and telephone volunteer excellent for that and would recommend them to you xx hugs Ax
My counsellor pointed out the very same thing yesterday, and I think I'm still processing it. Thanks so much for the response. I think perhaps choosing the people who are safe to be honest with is better than pre-emptively deciding noone is safe at all. xx hugs back, Bat
I am glad Bat that you are talking with her about it. It certainly helped me too to discuss these feelings and I think your post is very well weighted and considered x
It is an interesting question. We all need a place like this where we can tell it like it is, in the knowledge that others will 'get it'.
Before diagnosis I had no idea that there were diseases which involved just plain feeling awful, and I certainly didn't connect feeling bad generally with joint symptoms. I never told a doctor that I simply felt like I was falling apart - I thought it was too vague and maybe, somehow, that it was my fault. These days I know better but if I wish I'd done something about it sooner, without worrying about being thought neurotic.
On the other hand .... this disease irks me many times a day & I try to evaluate whether there's a real / new problem or whether it's just par for the course before saying anything to anyone. I reckon there are some things I'm just going to have to live with and I so want to get on with my life without subjecting others to a running commentary (or myself for that matter - thinking about the damn thing can become a habit). So it's not always about moaning or not moaning .... if whatever's up with me fits with 'the new normal' I look for distraction or ways to help myself and the more I learn about how the disease affects me, the easier it gets to find ways to live with it without it taking over.
It is quite obvious that most people here have at some time had to state very positively how they feel in order to get the medical experts to take notice of their incapacity. This is a real shame, as with the exception of the rheumatology professionals there are many, many people including GP's who do not understand or appreciate exactly how people like us with RA/RD really are feeling. This is probably because of a lack of education of the disease and a guilt complex on behalf of the patient that people don't like to moan for fear of being given an adverse label. I personally have come across many people that relate RA to general aches and pain and even osteoarthritis that many of us get particularly in middle age due to wear and tear. I don't mean that people with osteoarthritis or similar are better off than people with RA because I have both myself and can understand the pain associated with both, but if people were made more aware of the problems associated with RA/RD and the toxic drugs that we have to endure, then perhaps there would be more general consideration and real appreciation to persons like us. I really believe that there is insufficient publicity associated with this disease, consequently we get tired of explaining to the uninitiated exactly how we really feel! However, it doesn't alter the need to really explain to the medical experts and express how one really feels if it is going to achieve the desired affect and get some real help! I have had this disease for so long now that I have become immuned to the lack of understanding, but have had generally good association with medical professionals to get orthopaedic operations performed due to RA damage.
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