How do I get my parents to understand RA? : I’m... - NRAS

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How do I get my parents to understand RA?

I’m currently feeling very alone. I’m the only person in my family with RA and my parents think it’s my fault and that it can be cured. My dad asked me today: Now what’s the doctors plan to get rid of this? How can you make it go away permanently? They don’t understand what chronically ill means, they don’t understand that it’ll never go away. To me it seems like they’re in denial. When I try to explain they say no it’s because I’m overweight and lazy and that I don’t exercise which is not true. I literally just got sick last year in August with a high fever and pain in my joints and it never got better. How is it my fault that I’m sick? Please explain to me how do you deal with people’s comments? They judge without even knowing the full story. I don’t know how to explain it to them more than I did already. RA makes me very depressed and not having support from my family isn’t making it easier to live with this illness. I’m considering just printing an article about RA off the internet and giving it to them to read so they’ll get an idea, but I don’t know. I’m just feeling so isolated. I just wish people had more empathy. Society doesn’t care about the chronically ill. I’m being pushed aside, hidden in the background. Really, people can be so ignorant.

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Hi Kitty50ffff. I’m sorry you are feeling so alone and your parents don’t understand RA. The NRAS do some information booklets here

nras.org.uk/publications

That might be of interest to you and you could give them to your parents to read too. I too have no one else in the family who have had RA and it is hard for people to understand if they have never known someone with it.

It might be easier to talk to them about it once they have read some information. Please do keep coming here to talk to us all and get some support this way. Even to have a moan, we don’t mind, honest 😊 We have all been where you are early on when first diagnosed and there is a wealth of information and experience from people with RA here if you need it. Sending you gentle hugs.

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Hi Kitty...bless you that’s must be hard for you when your own parents don’t understand your condition. Have you tried explaining it to them or shown them any information about it? Do they come to any of your appointments with you? That’s what helped my husband understand it more by coming to some but not all of my appointments with me.

My family understand it but they don’t let me wallow in self pity (not saying you are😊) and encourage me when I’m feeling down etc sometime it’s a good thing but not always!! But I do appreciate the way that they don’t let it be all about RA all the times, RA does not define me it’s something I have to put up with it as best I can. My husband helps me as much as he can but I do not want him doing everything as that’s not fair on him.

It’s a very misunderstood condition made harder when even our family and friends don’t want to understand it either. You can always come and chat to people here who will understand how you’re feeling and maybe give the NRAS helpline a ring for some advice too?!

Good luck 🤗

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Both responders have given you positive advice. So do try these routes. However, don't get your hopes too high as sometimes you can't make people listen and change their ways. So you need to concentrate on you. And if your family won't or can't help then look elsewhere. There are support groups run by NRAS, so look to see if there's one in your area. If not, start one!

I give people one or two chances, and then move on. So with one of my sisters I really don't bother to discuss RA with her as there's no point and it would just sour our relationship. We talk about other things, and she's still my sister who I love dearly - just totally hopeless in this area!

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I know that my husband would try and understand as he has copd but also know that as he comes to appointments with me it makes all the difference and also he can ask questions as well. No one in my family has read anything they seem to want me to explain with varied response. Close family are the best. Time may help but its up to you how much time and energy you give them. As HH says she has a limit on it, completely understandable as energies need to be put into you. Come on here where others 'get it'.

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Hi Kitty, you’ve had some fantastic advice from people here, please listen to all they say!! and never ever let anyone push you aside and into the background! you deserve better!!! Keep strong my friend, your with good company now. 🤗 X

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You’ve had lots of good suggestions. I can imagine how frustrat8ng it must be for you. Sometimes even the most sympathetic people just don’t really understand when you are ill.

Do you think your parents maybe feel guilty that you have RA?

Have you thought of taking them along to your next rheumatology appointment, then they can hear what your doctor has to say about it. Maybe then they will realise there is no magic cure..

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Lots of good advice Kitty. My mum doesn't get it either and I've been through a range of emotions with her, from angry to the place I am now, that of acceptance. But it has taken a while to get here.

I speak to her every day on the phone and she asks how I am, and I say - not good today, or okay or a better day today and we move on !

I think part of the problem is she does not understand (damn that arthritis word) and can' t do anything about it.

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Sorry your parents are no support to you Kitty,but at least you have us on here darling. Next time you take them to your apt and get the rheumy inform them that it is not your fault. Also explain to them that it is inherited and see if they know who in their family had it in the past. That shifts the blame a bit away from you. I didn't know i had inherited it from my dads side of the family.xxx

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You have my utmost sympathy...I was repeatedly called a lazy bastard off my Father, despite being in and out of Hospital since the age of 5, he never accepted it...I tried for years to convince him! This just wasted my emotional energy...He considered me the runt of the litter! He made me feel like I had somehow brought the still's disease/JRA on myself! There's more to the story than this, but life is too short to worry about tossers like him!

My solution was to tell him to F-off...

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I don’t think I can add to all the good advise you have already been given! I know it is hard to make people understand and some never will. Stay strong! Xx

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As well as this chronic illness I’ve also been deaf from birth. A couple of years ago I was fitted with digital aids and they’re so wonderful. My mum doesn’t acknowledge my deafness or my hearing aids, completely ignores them, so I don’t mention RA. It’s important to be strong and resilient yourself. Resilence is the key. X

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Hi Kitty50ffff, I remember very well when I was first diagnosed fifteen years ago how lonely, angry, depressed and isolated I felt. I felt robbed of the ability to play properly with my then two years old son, work as I struggled to walk and basically be a mum and wife as. The pain was relentless and excruciating. You will eventually get your head around this disease, find the symptoms ease with the medication that suits you and hopefully get some great support from your consultant and specialist nurses. In the meantime there is printed information you can pass on to your family, but will they read it? There are some excellent YouTube recordings which you can watch together and discuss. There are videos from a medical point of view and lots of personal stories. I wish you the best of luck and keep offloading any thoughts and feelings on here.

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Kitty get them to read some of these post on here.. hate that people think we’re cranks..

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That’s awful for you kitty, I believe you, but I would wouldn’t I ?😉 seriously though, there is a really good description that sums up RD in a few sentences on the back of the little NRAS cards (probably on their website too) i’ve Used it on PIP forms etc it’s that good/succinct. Give them one to stick on their kitchen notice board/ forehead, whatever 😊 tbh my parents took a while to get it (it’s that arthritis word again I think). Good luck xx

nras.org.uk/publications/wh...

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