My mother has always panicked about getting RA as my gran had it. She hasn't got it but I was diagnosed with a severe and aggressive form in September this year. I haven the responded to treatment and the disease is in every joint right down to my collar bone. Last week I was forced to go off sick after battling it for four months.
The thing is I feel really annoyed at my mum. Her and her sister have taken the attitude that it's nothing serious. My aunt said pah there are drugs to cure it now, she's just a drama queen and my mum just goes on about how the mild osteo in her hip is the worst thing ever. She spends her time telling me how upset she is that the Doctor won't treat the pain my brother hasn't in his shoulder!
The last few weeks have been particularly bad for me pain wise. My mother is on holiday for a few weeks with her sister, I just get messages about what a great time she's having. Except today when she messaged me to say a friend there has RA in one leg but it hasn't stopped him and he's managed to keep happy, though the hospital ignore him. I replied with a curt. Well if I only had it in my leg I'd be happy too.
Has anyone else experienced this kind of thing? It's really beginning to annoy me. I'm not looking for oodles of sympathy from them just a little more empathy.
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Frankiefarr
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Hi if only the people that moan had it themselves then they would see what a horrible disease it it, we may look alright on the outside but we certainly aren't on the inside, if anybody asks me now I just tell them I have rheumatoid disease they seems to throw them
Oh indeed I have...very similar, so I understand just how you're feeling! I'm not going to put my story on here...but please PM if you want to chat 😊 Some people will never change we just have to show we're the bigger person...tough at times however especially when it's a parent or a spouse. X
I am not sure how true this is,but i was told early on in ride with Ra that it skips a generation. My dad never had it,but my grandparents did. Don't read those messages from your mum use the time to rest and ignore what they are saying darling.xxxx
Hi Sylvi, I had read that RA skips a generation but sadly I found at my cost this wasn't the case. My mother had it for 30 years before she passed away recently and I was diagnosed with it 2 years ago ☹️️
I did not know there was such a disease until I got it. No one in my family had it before me. But later I found out that my cousin, from my mother side had it long before me.
A lot of people, especially in the traditional Chinese families, would like to keep the bad news away from others, including the family members. I am a very different kind of person, the moment I got it, I shared with all who like to know. I knew this is genetic related disease hence I wanted those in the family to have the knowledge to be ready for it if it comes. I also not hesitate to share with my friends who like to know around me, in return, I got many helps from them while I was very sick.
I guess you never understand until you live with it. Many people including myself until i got it have no idea how serious RA is, they think its a joint problem and have no idea its an auto immune disease.
That is absolutely true Leonwp, and if you are not on a cane, or walker or something, and you are not constantly grimacing, they assume it cannot possibly be that bad. But of course we know it can... They compare it to OA, and they are not really even close
I confess I was ignorant about RA too until it arrived in my life. I think the word 'arthritis' makes people think of it akin to osteoarthritis - a few aches and pains. As we all know it is so much more 😟
I don't expect people to understand it - thank goodness I have a good GP, great Rheumy team, and this wonderful place.
You really can't manage other people's perceptions or expectations about RA, I've given up trying and feeling miffed by their attitudes to it.
Keep positive, keep fighting and keep visiting this great place.
It's annoying all right! But sadly very common an attitude.
I try to let comments from friends just roll over me, but since it's family that's more hurtful. I think you either have to find a way to let it wash over you or have it out with her. The worst is to let it wind you up all the time.
But you could arm yourself with NRAS leaflets, and ask her to sit down with you and go through them. And be quite blunt - it sounds like you might need to shock her out of her fixed ideas about it.
It could be your mum's inadequate and negative way of coping with you having RA. Maybe a bit of guilt in there also as it's seems to have skipped her generation.... if your relationship with mum has changed drastically to a negative one from a previously positive and supportive one then I'd say she's struggling to accept what is happening to you. If she's always been negative and unsupportive then I'd look elsewhere for support and keep my interactions with her to a minimum.
Good luck with everything and keep using us for support - not the same as having family onboard I know but at least it's something.
Yes people don't understand how long it's taking me to recover from knee surgery nees are ok it's the other bits.
You're not alone but it's so annoying. There are leaflets to leave around or maybe you could get your mother or someone influential to come to RA appointments that might help
Oh I know exactly what you mean! I've been dismayed by my families reaction to my RA. My husband's of the view that I could help myself by exercising more and getting off my bottom. In fact if I exerciseed more Id probably be cured!
My Mum was strange, she totally ignored any comments/moans for the first 6 months, but Ive been really blunt about how bad it feels and she's much more supportive. I think she just didn't want to think about it.
My girlfriends have been great though -thank goodness for them and in the short time I've been on this forum, I've had a wonderful response to my often silly questions and so much kindness. It's really kept me going through the last couple of months ❤️
Cd it be she's in denial thru guilt at passing on faulty genes? I only discovered late on that RA was in my genes via my long dead dad and now worry tht my daughter and grandkids may develop it. Hard to ignore her being so dismissive but maybe she can't face / admit your pain. Sorry for your pain, both physical and emotional but wish you luck in shrugging off the attitude you've met. hugs xx
((hugs)) my granny had it too, mums family have escaped it but (you've guessed it!) I was diagnosed in March. I thought my family were getting it but i don't think they realise just how much pain i have either.
My wrists, hands, ankles and feet and the latest...eye are all affected and I'm just so shocked at the speed of the progression. M x
Oh God Frankie - We gotta love our mothers, don't we? I'm sorry she is doing that to you, but PLEASE don't take it seriously, or let her hurt your feelings. Annoyed is fine however :-).
I have three sisters and one brother, and I am the oldest of the group, but my mother still does things like that and her main reaction to my having RA was that she didn't know what it was. When I explained it to her and said they thought it was genetic, she immediately informed me that it didn't come from her side of the family. ha ha. What is funny is that my sisters (two different fathers for the sets of kids) that have the same father, have allergies, asthma, etc. - all autoimmune... sheesh. I finally got some of her attention by telling her that they were putting me on chemotherapy (MTX), and she actually started looking it up once in a while.
As for your brother and mine, my mother would give up all four of us in a wink if she had to just to keep my brother. So I don't worry about her with him. I just let him be the king and ignore it.
Keep your feelings up. Come here when you need sympathy and we will understand everything you are going through - at least some of the folks on her have probably been through anything anyone of us can go through. Hugs
It's a really hard thing to deal with. I got diagnosed in April but tbh I still haven't accepted it myself. People try to understand but unfortunately no one can until they have it themselves. Really ignorant people assume it's an old person illness and it's just arthritis. I often get "oh where do you have it? and oh yeah I get that in my toe" I've given up trying to explain apart from I just say it's auto immune and I have it everywhere. Others try but how can they understand with the variation in symptoms daily, the sheer amount of symptoms. I'm a cripple one day and the next I can be OK.
There is no point people comparing one persons illness with another's even if the diagnosis is under the title RA.
I wish you all the best in trying to educate those around you so they can at least try to understand.
At least you have us here to go to as we all most certainly do understand.
Hi, oh bless you. Yes, I have and it's really hard. I only have a few relatives and they have been awful saying similar things to yours. I have found my husband and son and a few friends to be lovely though. I really empathise with you as it is so very hurtful. I have come to the conclusion that my mother- in- law and brother really just don't care about me and I have had to distance myself from them because their lack of empathy was so painful and also made me hurt and angry. I am a few years in and have more or less come to terms with their utter horribleness but it has been easier to distance myself emotionally from my mother-in-law than my brother so can only begin to imagine how hard it must be for you to be on the receiving end of this from your mother. I hope you have some people who are empathic. The thing with this disease is you find out who cares about you and who doesn't. Sending you lots of empathy and very best wishes.
That's very true, my sister knows I have RA through my mum and have had the diagnosis for the last 12 weeks or so, I have had no contact whatsoever. She's not a nice person anyway, so this just confirms that she has no interest in me at all. I really don'[t have the energy to bother with her or her husband anymore especially now, I feel sorry for the kids though, who are missing out on knowing us, I am hoping they find their way to us when they are old enough to venture out on their own..........
Thanks everyone. Yes given my gran moved in with us when I was four and we ended up losing our childhood to caring duties you'd think she fully understood it. My aunt's influence is not a great help. My mother's attitude seems to be...me, me let's talk about me.
When I was studying nursing years ago we did a class on RA and the nurse tutor said to me if anyone gets it, it will be you not your mother because it skips a generation. The RA nurses have all dismissed that here but she was right it did in my family
I feel bad for wanting to say. For Gods sake you are 78, you have some osteo arthritis in your spine. Well guess what I got that 5 years ago. You have been bloody lucky to have had an active life with very few problems.
I can fully understand how you feel. My mother used to tell me not to tell her any bad news, and she is only interested in good news. When I was almost collapsed and wanted a divorce, she was angry with me telling her this bad news and left me and my kids immediately. I struggled all alone and brought them 3 up without any help from anyone.
When I was diagnosed with RA, I did not even tell her because she always stopped me from telling her any bad news. However, during Chinese New Year, we visited her, this is our tradition, I had to tell her that I had RA and I was in pain, therefore I could not move fast as I used to be. She said she also had it on one side of her shoulder, hence she could not lift up her hand much. I tried to explain but no used, I ignored her and refused to talk about that since.
One day, when her sister and us met up, my aunt asked me about my disease and she told me that her daughter had got it too, my aunt came to know this from my mother, my aunt said that she went to take care of my cousin for many months until she was very much better then she left her family. Then my mother listened and felt guilty of not listening to my heart. My aunt asked me about the divorce, I told her of the problems that we had hence I could no longer tolerate therefore decided to have the divorce. My mother was beside us, listening closely to our conversation and she said that she did not know anything of my suffering and thought that when she left, we could keep to each other.
I gave her straight on her face, because I was very hurt for many years. I told her right in front of my aunt and her family that my mother chose not to know any bad news happening around me, so I stopped telling her my heart since many years ago, therefore she could only know it from others not directly from me. Again, she said she could not also help me if I told her how sick I could be because she had to look after my brother's young kids.
My aunt told us how suffered my cousin was so my aunt had to leave everything behind and went to look after my cousin for many months. She could not imaging how I could live alone for a month at the very peak of my suffering without anyone around me.
Therefore, you are not alone, just ignore those who do not care and get the support from those who care about you. Open your heart and discuss about it, you will find the people who care to come to you eventually. With a positive attitude to accept and fight the disease, you will recover much faster and better.
My daughter said I had to stop making myself a victim and now has no contact with me sad but true
My grown up children knew I had lots of hospital appointments going on & asked me what was wrong , I told them I had RD & sent them links for information if they wanted to read about it. Not one of them have mentioned it since. That was four years ago. I learnt very early on that people do not want to know. A close friend of mine when I told her, said oh yes I have a bit of that in my knee. She's very well educated & is always on her computer looking into things, so reckon she chose not to know. Because of that I chose to tell no one & never speak of it. It's sad but I'm not bitter nor do I hold it against them.
Thanks for all your replies. Good to know I am not the only one. It can be very hurtful and frustrating. I feel like the next person who says..oh yes I've got a touch of that in my knee....etc...I will just quietly bang my head on the table
This is one reason many of us choose to call RA RD Frankiefarr, it often stops people in their tracks & question what it is rather than respond with the usual "Oh I have that in my knee, I just take painkillers"! There's only one person I know who just doesn't get it & she's a hypochondriac!
I'm sorry but Mother or not i would be very angry with her. Give her as much info to read as possible and tell her to get it in perspective. As for your Aunt - is she really that naive to think there is a cure as THERE IS NO CURE. Very few people have been lucky enough to have theirs "burn it's self out". What planet are they on ? You must have the patience of a saint and i wish you all the best. Take care xxxx
My mother was crippled by polio in 1952,she continued to lead an amazing life,making people aware of all disabled problems in the British House of Lords, my father,also disabled,made his voice heard in the House of Commons-whenever they were asked ‘how are you’, they answered ‘ musent Grumble ‘-funny old world, I say the same if anyone’s asks after my health!’n
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