Sorry I'm as I am

I feel like I only post and contribute when I need support. That’s not intentional actually. I’m so frigging scared of this disease being my future presently,I have dipped out when I think it might not be. But that’s not fair to anyone else is it? So I just thought it consequently deserves some sort of recogniton and obvious apology at being so selfish.

There’s no need to apologize at all. Most people when they first arrive here are in some sort of crisis. People who stick around over time usually are then more able to contribute and provide more support to others.

That’s such an interesting thing to say. Being ill can make us selfish, or self-centred, if there’s a difference. Same goes for the fear factor. I guess it’s a pitfall that we all need to be aware of.

But I don’t think you’ve been selfish. As Stoney says, the early days are so tough and bewildering that reaching out for support online while simultaneously digesting other peoples’ situations is almost impossible.
There’s so much to think about and limited time and energy to get our heads around it all and work out what to do for the best. Some selfishness is therefore required, some might call it focus.

I have found this disease to be considerably less terrifying than I thought it would be, things do get easier in some respects. Oh and I have to say that you’ve given me some great help / support recently! (I was looking for a suitable emoji but don’t think I’ve got the hang of it, I was tempted by the aeroplane or the hamburger).

1 Like

Oh Poo-therapy, don’t worry about that! You are reaching out to people who totally understand what you’re going through and they have the right words you need to hear…seems like people at home and work don’t understand as well and they’re really at a loss for words. I realized I’m much, much better at supporting people with PsA and giving advice based on my experiences than I am about any other disease. I tend to shy away from people with certain other problems, not because I don’t have sympathy for them, but I’m afraid I’ll say the wrong thing!
I’ve often felt, too, that I complain too much here–but, really, people can choose whether or not to read my discussions (usually I’m “complaining” if I start a discussion)…nobody has ever told me to shut up…at home, as much as my kids love me, I rarely burden them with this–my husband totally ignores my problems because he has so many of his own.
If I couldn’t come here and vent and feel like I’m in a place where people “get it” IDK what I’d do!!!
So, keep coming back, and don’t feel like you’re a burden!

1 Like

I feel exactly the same but it’s not meant to be selfish - I just have so little knowledge and experience that I can’t contribute as much as other far more experienced people - our time will come though …

Thanks guys, I didn’t start this discussion to make myself feel better but actually just to say I was aware I was taking more than I was giving. And of course what do you all do but make me feel better. Yet again!!! :smile:

1 Like

It’s interesting to see this discussion today, as I was thinking something similar (ha). I am so involved/active on other forums and support groups, but most of those involve my son’s medical issues and all we’ve gone through with him these last 10 yrs. I feel so odd to come here and lurk most of the time, as I simply don’t have enough to offer yet. I know I’ve dealt with PsA for 15+ yrs now (though I didn’t get my official diagnosis until last November), but I feel like an idiot most of the time. :blush: I am enjoying reading what everyone here contributes though, and it is ALWAYS uplifting. I try to remind myself also that if I don’t have a lot to contribute yet, maybe that’s a GOOD sign that PsA hasn’t taken too much from me yet. I need to be thankful, I know! :slight_smile:



A version of this is going on my grave marker. You’re not alone!

It’s just the way it goes, Poo. We have good times and bad times, and times when we can offer a hand and others when we have to take the hand that is offered.

It’s overused, but “what goes around comes around”, and “this door swings both ways”. The day will come! Personally, I like it when you post because what you say is thoughtful and often entertaining, and goodness knows we need that here as well as straight up support.

And Sybil, I like emojis too. :wine_glass: :ship:

1 Like

:tea: and :wine_glass: will also be featured on my grave marker

You guys are too nice. But you’ll have been noticing I’ve been on line and contributing when I think I’ve something useful and positive to offer and that feels so much better. Anyway being Irish I love the 'chat too. Can’t resist usually especially now I’ve done some serious work on coming to terms to with everything. Gosh that does feel so much better. But I had to ‘grieve’ the whole thing though. Seriously, I literally had to grieve the fact this disease was my future. I had to have the tantrums, the running rings around my first rheumatologist to see how ‘bright’ I thought he was. And indeed whether he made my grade? Arrogant aren’t I? But I had to push hard at all the boundaries. Only in doing that could I accept treatment protocols and what seemed initially to me to be simply just weird and not very sensible.

Glad to say I got there. Eventually. Most likely still wouldn’t agree with some of it but can see why now. That’s an awful better place to be in my head! Phew!:blush:

Grieving the diagnosis takes many forms. Some yell, others cry. Some spend a long time in denial (and never get out of that state). Some resort to books or take to writing. And others engage the help of family, friends, or licensed professionals (or all of the above) to find their way through. Sounds like you’ve done a good job getting through and can now even find humor in some places. There’s no preparation for handling a chronic disease diagnosis. Well done you for getting to grips with it all and pushing on. :thumbsup:

Thank you. As a very dear Irish friend used to say ‘every cripple has his own way of walking’. Of course she meant it psychologically speaking. And we are you know psychologically - we’re all cripples of one sort or the other. All of us have different ways of walking towards accepting things. Whatever those things are too.

I don’t think main stream medicine (such as rheumatology, or dare I say oncology) thinks much about patients ‘grieving’ they’ve got x or y chronic disease at all. Chronic means it’s for life. You might get a better run and go into ‘remission’ or you might not. You don’t know and the medics don’t know either. But just a little recognition of the struggle you’re going through (as a patient) in assimilating everything at the alleged definitive diagnisis goes an awful long way too from a doctor to a patient. Just that acknowledgement. It enables the patient, makes them feel validated in their utterly overwhelming, and so confusing thoughts then and … And as a specialist if you listen first of all and then answer latterly, you can give a huge gift to that so unbelievably scared patient of knowing they’re not just stupid to be this scared, this overwhelmed, this angry and this so unbelievably frightened. Many of their questions might be stupid but what do they know about that yet? But patience and empathy and sheer indulgence and a wish to educate your patient surely must make for better outcomes? For both the patient and indeed the doctor?

As a society, grief in all its forms is something we don’t talk about much anymore. I’ve no idea why. Growing up, becoming an adult, by definition, means we grieve our youth, even just a bit. If nothing else, us on here, grieve the lack of capacity, don’t we? We celebrate that x drug or y drug gave us back capacity so much?!? Until or if that drug stops working quite so well and off we go on the merry-go-round of tolerating the next one, or the next combination. Quite a life sentence isn’t it? So of course we need to grieve. If we don’t acknowlege that we are grieving and shall most likely continue to do so at various times, well what have hope have we?

Grieving is allowing yourself to feel loss. Healthy grieving that is. That in turn allows you to recover your equilibrium and find a new centre of balance that helps, just then. And so you go on, falling and getting up again until you’ve sort of accomodated the loss issue and so move on with loads of lovely memories and an inner strength that just makes better sense. That’s mentally healthy. But it can be such a hard road too. It’s comforting when those that control how you’re going to deal with this disease recognise that too.

So I’ve decided that educating those who treat us in this is going to be my goal. And I’m laughing now as only me will decide on an ‘achilles heel’ and say now why don’t we fix that, thus distracting everyone from much else!

It’s been a long year for me. Full of tears, angst, horror and above all grief at PsA. I was brave enough to finally fix my gross bunion and ended uo with this instead or rather simply because I decided to fix my bunion. It came on top of grieving for the death of my very much loved mother, who in adulthood was quite simply my very best friend. We were so connected despite living in two different countries. We just made each other laugh lots and I miss her beyond all reason. But she was my mother and it’s ‘natural’ she died before me. And I know how privileged I am to know such a fabulous parental relationship. Had a great one with my Dad too but he died when I was 25 and I’m now 55. So I was very lucky indeed. And of course I’ve a partner I care about alot but there’s no one who ‘gets’ you in my view in quite the same way than a loving parent.

So maybe on here we should have a ‘grieving corner’ where you’re allowed to just grieve. Although in this day and age sadly, too many of us would never admit we’re just grieving too. Might not even know we are sometimes, even more sadly.

Gosh I’ve gone on one haven’t I? Sorry, But maybe what I’ve said helps some of us. I’ll shut up now. :blush:


Don’t worry about “going on”. I strongly suspect that your cogent words have helped a few of our PsA co-conspirators. And, so, I’ve decided you should get a prize. Cherish it, won’t you? :trophy:

Well janeatiu that’s just lovely, it made me smile and well up just a bit. Of course I’ll cherish it. Thank you. But you know we all deserve prizes too, for having to deal with this stupid disease, for being on here, helping eachother, making eachother laugh and supporting eachother and making each of us feel so less alone with the whole horrid thing.

I don’t know whether being Irish and still plodding my way through the menopause, which makes me far more emotional (and overheated) than I’ve ever been is a good thing or not. Hence the welling up issue above. But you certainly ensured I had a lovely day today all things considered, such as work etc. So thank you from me for that. :grinning:


Thanks for your very thoughtful remarks, Poo-therapy! :slight_smile:

1 Like

Poo, you have contributed to virtually all of the threads I have started (about me) and your contributions have always been ones of empathy or the sharing of knowledge. So - none of this nonsense!!! :wink: