I found out I have RA 5 months ago. I come from a big family. I am the oldest daughter with 5 other siblings. All are married except two youngest, they range from 43-30. I was always the big sister who coordinates all the holidays and if you need help I am there but recently I decided to stop doing anything for them, Since I found out I have RA none of my siblings ask me once how I am doing? Yes not once. I have a sister and her husband who both are nurses and they told me once “ lucky it is not lupus”. I feel like they are a bunch of jerks. I realize now at the end of the day I have to take of myself because you gave doesn’t mean you will get back. Am I harsh?
Sorry for the venting , I feel frustrated. Thanks for listening!
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Sunnyday1234
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I get what your saying! I have felt the same x unfortunately you can’t change x as being caring is part of who you are x I have learnt the hard way but you have to care of number 1 now x and that’s you xx Good luck and make the most of your good days xxx
Thank you for your support! I know now I have to take care of myself first👍🏻
Yep, think we've all had a rant about this on here. I especially hate the 'lucky' ones e.g. You re lucky it's not something invisible like fibromyalgia (best friend!). It's not a competition and it is invisible. My brother still thinks it's arthritis (like osteo) despite explanation. Best reply on here was use some of the little nras cards that sum it up in a few lines: tho i think they said stick em on their foreheads lol! X
😖🔨 • ‘Compassion fatigue’( en.m.wikipedia.org/wiki/Com... ) can slip into (even the most caring of) folks — especially carers in helping professions (nursing, etc.).
😖🔨 • Sometimes family members are just so involved/ overwhelmed in their own daily lives/ responsibilities/ demands/ issues, etc. that they mayn’t have anything ‘left to give’ to anyone else — even their own family members! 😳
😖🔨 • Being the ‘go to’/ ‘fix it’ big sister — taking care of everything (& everyone) ‘family coordinator’ may have inadvertently set you up as, “she’s fine, she’s handling it on her own as she has handled everything else" . . . They mayn’t be fully aware of you’re vulnerability & need for actual help/ support at this time? 🤔 In other words, you’re ‘competence’/ ‘ability to manage a myriad of matters well’ may have them thinking you can handle this too — without a helping hand? 😳 Asking for assistance 🗣💬 — plainly, clearly — sometimes does the trick? 👍👍
😖🔨 • Don’t discount good ole’ narcissism ( helpguide.org/articles/ment... ), which seems to run rampant (a cultural norm?) nowadays? 🤷♂️ 🤦♀️
😖🔨 • Could also sadly be 👉 Some folks can’t give what they do not possess. 😔
😖🔨 • And, sometimes we ourselves need to climb on down from the cross of martyrdom ✝️ & say ‘enough is enough’ — I no longer need to wear the mantle of big sister, holiday coordinator, ‘always-available helper’, etc.. 😳
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On that cheery note 🤪 🙃 , yes, please take as good a care of yourself as you possibly can, Sunnyday1234. 😌 🙏
Sounds like now‘s a good time to focus inward on your needs — self-love 💓 , self healing 💗 , & asking for help from people 👨👩👧👦👨👩👦👦 who are capable of giving you the support you need.
Be good to yourself 😍 , Sunnyday1234; the rest can take care of themselves. 😌 🙏 🍀 🌺 🌞
(Glad to hear, Sunnyday1234. 🙏 😌 ) Please keep taking kind ‘n loving care of yourself. 😌 💞 It’s your turn to be on the ‘receiving end’ 🤲 of understanding/ support. 😌 (You’ve more than earned/ deserve it. ☺️ ) Kindly, open heartedly accept it from wherever (whomever) it comes & use it to propel yourself forward toward improving/ healing. 😌 🙏 🍀 🌺 🌞 [Sometimes help comes at just the right moment 😳 from unexpected places to our great surprise & delight 🤗 .]
You should have a read of my early posts. I was diagnosed 7 months ago and I have been utterly gobsmacked at how little concern my sister and friends had. No phone calls no visits no emails. Nothing. I have always been the fixer too. And I have never felt so hurt and let down. So I hear you. You will soon realise that most of your support will come from here xxxx
Thank you Jules13, I just never thought it will be like this but I guess we have to find out the hard way. Sad but true. Thank you for your support and understanding!! 😇
It’s perfectly normal for you to feel this way and after years of enduring really insensitive behavior from my own family I suppose it is perfectly normal for them to be actually acting this way as well. WE HAVE TO ACKNOWLEDGE THE FACT THAT NOONE OTHER THAN RA SUFFERERS WILL EVER HAVE A CLUE! Sorry for the caps lock but it’s true.
Even when people find out about your illness they have no way of really sympathizing because that just have no idea how poorly we are. The pain, fatigue, discomfort, depression all in one ... who can imagine? Even our doctors really don’t get it sometimes... and it will get us nowhere if we get mad at them.
Yes please you do need to shift your priorities and do what makes you most comfortable ( that’s great advice even if your are not sick) and those that do this for some reason do not get ill....hmmmmm.....and don’t feel bad about making yourself first.
Your family as all ours love you! They just don’t understand and I have decided that I really don’t want them to ever understand. The only way they would understand is if they got sick with this and similar conditions and I wouldn’t wish that on them.
Hi Izabella - You beat me to it. I was going to say the same thing.. My family just goes "uh huh" and then changes the subject... I do love them, but as you said, they just don't understand - NOR do they want to. Good perspective...
Hi . Thank you so much for the support, You are right . Only we can understand our conditions. I have to shift my thinking to “don’t take it so personal and me first from now on” . Thank you , I need to hear that.
Yes do I know how it feels . I use to have every one over. Then I got RA and no one seams to care. It’s all about them you don’t see it until you need help . I lost my job and we really struggled because my husband also got made redundant so now with no money to be able to join in they are no where to be Seen. They make excuses why they can’t pop in. I have now learnt the hard way after lots of tears I am the only one that can help myself feel better about it so I now just think of number 1 ( plus my wonderful husband) . I am sure my family think it’s nothing my sister even says I wouldn’t take any medication for it you should just ignore it as lots of the effects can be in your mind now you know you have it and there are lots of people worse off. I have now taken a low paid job of many hours but starting to climb back up.
So yes rant about it get it out and always remember we are here for each other
No, my family and others don't understand. I learned that early on and it's fine. I would not have understood it before it reared its unlovely head just as I don't 'get' myriad other illnesses. This nasty disease has already robbed me of great chunks of my life already and I refuse to allow it to make me be defined by it. I haven't the energy to waste. Awkward so-and-so ain't I?
Hi Sunnyday1234 - I think I am one of your family members. About a year ago my good friend got sjornes (sp?) and I basically (being ignorant about what it was) kind of replied “oh ok” and really never asked her about it again. About 4 months ago my blood work came back for RA. Still going back and forth because the test comes back with barely borderline numbers and I don’t have symptoms so need to do another blood text in April. Now with what I’m going thru I never really knew what any of these diseases were until I possibly have it and did research. As far as the two nurses, well they should have more compassion and open dialog with you but the others - I bet they don’t even know or understand what you have. Just a thought 😉
Hi, thank you for your understanding, after listening to all the wonderful supporters here I realize people honestly don’t know but at the end we have to take care of ourselves.
I hope you find your answer soon about your health but if you have any questions this forum is a wonderful place to get information. Take Care😇
Sometimes you need to take your mind of the real target ie RA everyone deals with their diagnosis differently when your calm you’ll carry on and look after yourself,you’ll need all the strength you have to deal with this but we’re here and if you need to rant do it to us we’ve been there and know how your feeling inside not just on the outside, take care and ask when you need help ❤️🌺🌺
Hi I know exactly we're your coming from . No one understands tbh unless your going through it yourself . I'm quite new on here and find it so helpful . Everyone is going through the same so we all relate to each other . If ever you need to rant or just need help then do it in here everyone is so supportive. Take care
I totally get where you are coming from. I have experienced a similar disregard from most people in my life. You really do have to take care of yourself and put yourself first. In my opinion, one of the worst things that you can do though is isolate yourself from everyone. Sometimes, if you're upset about it, it's important to tell the people in your life how you feel. Internalising emotions can be really bad for your health. Also, I find meditation really helpful... I was sceptical at first but it's honestly a lifesaver.
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