people who just dont understand

peridotlouise

i am getting sick with people just not understanding what I have
My mum, is the worst one,
-'you only feel achy because you're a bit stressed'
-'i have IBS, thats worse than what you have'
-'why do you need to take all those pills for'
-'you won't be bad with RA until you've had it years and years'
-'we've all got something wrong with us'
-'im achy too sometimes'

i try, and i try, so hard to explain to her about the disease...shown her stuff online, leaflets my rheumy gave me, and its really getting me down. does anyone else have problems like this with people close? it upsets me as i feel she undermines everything i say or feel and that im overreacting.

elnafinn

Hi Louise

I am sorry to hear that your mum does not seem to understand what you are telling her about how you are feeling and so on. She is probably upset to hear that her daughter is not well and all the baggage that can accompany it and this is her way of coping with it. Not helpful to you, I know but she will be worrying about you, I am sure, but does not know how to react and is sending out vibes that are upsetting to you. It is a real difficult one and I wish I knew the answer.

Gentle hugs
Elna x

skezier

Hi Louise,

I think Elna has a point there. You Mum cares about you, hell she loves you and she can't cope with what's happening to you so she kinda puts it down a bit.

Its not she doesn't care and on one level she will understand as well but she will hate it as much as you do because she loves you.

Time is often the only answer I think.

I wonder if ringing the helplines after they are back (not sure what hours they are working but they usually have a post saying on their forum) both for you and your Mum could help? Maybe if she talked to them he would be able to say and work out how its effecting her so then she can help and support you?

I know other folk can hurt a bit with their continual belittling but when its your family it sort of hurts more but I am sure its cus she can;t cope with it and hasn't come to terms with it either.

I really hope she will see that you do have to take the tablets and you do have the bone problems but give her a bit of time to understand as your her child (no matter how old) and it hurts parents to see their kids in pain. Thats when the helplines might be an answer for you both separably so your both free to say how you feel.

Hang in there and she will come round in time I am sure. A cyber ((( ))) Cris x

hileena111

Hi
Nearly all of us have come across this with people but its not usually our family......its outsiders who try to put us down
I think Cris's idea about the helplines when they get bak might help
Sorrry I've no other suggestions

Love
Hileena

petals

Hi,

When I attended my first appointments with rheumatology I took my partner with me. He could see with his own eyes all the inflamation which was showing up on my ultrasound scans. He was there when the rheumy explained about the condition and how it may affect me. Because of this, he understands that this is real and not an imagined illness.

Has you mum attended any of your appointments with you. If not then maybe she should attend with you on your next appointment and you could ask your dr to explain to her that RA is a serious, painful, life affecting, fluctuating, incurable illness.

No wonder you are upset, I get this attitude at work and that is bad enough.

Good luck with this, it all comes down to education but some people just don't want to learn.

best wishes Petals x

kellerman

There will always be some-one who doesn't understand. I have 5 grown up children and my eldest daughter is the same with me. It hurt for a while but now I've learned to accept it.My gran had RA and I know I didn't fully understand what she went through.Your mum loves you just as I loved my gran but she just doesn't understand.
It must hurt you but try and be patient with her. Nobody likes to see their child suffering. Have you tried the Spoon Theory?
It didn't work on my daughter but might be worth a try with your mum.
Come here if it gets to you....we understand. May

frogmorton

Hi Louise

I think too that your Mum might be 'minimising' your RA because she is too upset personally to cope with her own daughter in so much pain

Some parents do feel an element of guilt that it could in some way be her 'fault'

Just a thought though....is she the sort of person who has been 'the poorly one' in the family before this happened??

Anyway back to the issue in hand. How to deal with it. I suggest you try hard not to tell her too much now (take her to the rheumy though if you can????), but find others (like us lot) who do understand and won't belittle your pain.

Hopefully in time she will change.

Love and supportive hugs

Toni xxx

jillyb1

As May said try the spoon theory or the gorilla in the house story to explain how you're affected . Jillyb

mig

I think Elna hit the nail on the head,no matter how close you are to some-one they are not you,everyone of us is different ,how our illness or pain affects us is so personal,my hubby is great and helps out where ever he can but he still does not fully understand and unless you have this desease you never will.Your mum loves you take comfort from that.(((()))) Mig

Heather65

Hi louise it can be hard when the people closes to us find it difficult to understand keep talking to them and hopefully they will start to understand what you are going through

MrDJ

i cant believe the amount of post ive read on various forums about family just not understanding and making very awkward for the sufferer of this ruddy nasty condition.

i found this letter which has helped quite a lot of family members understand what you are going through so its well worth a read and maybe copy it to show whoever doesnt understand your condition.

hope it helps > http://www.arthritiscare.org.uk/forums/young-people-s-forum-f10/an-open-letter-about-arthritis-t31110.html

(use the link in the second post as the first one is broken and i cant edit it)

Hi here is the link
http://www.psoriasis-help.org.uk/forum/psoriatic-arthritis-discussion-board-the-clinic/open-letter-to-family-and-friends/

Moderator
YEH

elnafinn

Hi Louise

Some people find it much easier to empathise with others who have problems, whatever they may be, than others. The closer the person is to us, sometimes makes it more difficult for them to deal with it and to know how to react and what to say/do. If your relationship with your mum has been good then you will be feeling greatly saddened by her response. It would be best if you can find one person who will "hold your hand" through this. It can be surprising who does turn up trumps when one needs support, if you talk about it to others.

We are here too and this is a place where we can have a rant and say how we feel which can be a good and helpful back-up.

Gentle hugs
Elna x

RosieGlow

It does sound very much as if your mum is in denial, Louise. Add to that the popular perception - from people who have never had it! - that everyone gets "a bit of arthritis at times", and then, for those people, the minimisation of the disease is complete.....sorted. Some people really do need to walk a mile in another`s shoes before they can have any true understanding of anything. I would stop trying to explain anything to her, or justify how you are feeling, as it only causes you more suffering. Turn to the people who truly do empathise with you.....namely those on this Forum......Rosie.

valval

hi my mum tries but does not get it she is 75 and fit i wish i was lol but i get if you swim more exercise etc i know she just trying to help and does not know what to do for the best she does not get how it differs from day to day i do not get it so do not expect her to and she also passed it on to me which worries her there no one else with any auto in our family. but i know she loves me and just puts her foot in her mouth sometimes. i forgive her as if i live with it and do not get it how can some one else and she my mum enough said just forgive her she will get it in the end concentrate on you val

pinkbritishstars

My parents are the same though they do try to understand.

With them it's if you lost some weight you wouldn't have so much wrong with you- very hard to lose weight when it's difficult to exercise!!!

Hugs Louise

Pink xx

stickywicket

It is essential that we all have people in our lives who understand but we don’t need everyone to understand and, for my money, mothers come a long way down the list . The Spoon Theory, The Gorilla thingy and the letter are all useful tools for helping people who really want to know how things are for us. But many/most will not really want to know for all sorts of reasons, some more valid than others perhaps. That seems perfectly reasonable to me.

We mothers are strange creatures, peridotlouise. When my adult sons are doing hair-raising things I still sometimes joke with them that I grew, carefully from dots, those bodies that they treat so lightly. We hate to see our children hurting no matter how old they are, or what the reason, and we all deal with it differently.

I agree with the others that your Mum might be denying your pain because she just can’t face up to it. When my sons are ill, or in any difficulties I usually find I have to back right off and just allow them to share what they wish to share so as not to pile my own anxieties onto them in addition to what they have to cope with. (I guess it helps that they both live a long way away.)

My own mother flipped when I was put on pred at 15 for my arthritis. Given the opportunity I think she’d have made an invalid of me, not allowing me to do anything interesting in case it made it worse. (I’d probably have died from obesity and boredom by the time I was 30 :roll: .) I soon learnt that the less she knew the better. Once I was at uni she was told stuff on a ‘need to know’ basis and it worked well. I always had 2-3 great friends to whom I could offload the full truth whenever I needed and I never felt I needed more.

Only you, and a few chosen friends will really understand how stuff is for you. Just don’t talk arthritis any more than is absolutely necessary with the rest. And don’t talk meds to your Mum

tillytop

Hello Louise

This is a common theme on the forum and I know that I still, after many years, sometimes feel an overwhelming need for people to understand, and (probably unreasonable) frustration when they don't. My GP told me recently that, from his point of view, rheumatoid disease is one of the most complex diseases to deal with from a medical point of view so I guess it's no wonder that people who don't live with it find it hard to understand. And it's made harder I think because it is not always visible - or rather the things that are visible do not always reflect how we really feel. I am using crutches at the moment (thanks to a non-ra related foot injury) and I have been amazed by the responses from people wanting to know what I have done, helping me with things, and sympathising. And I have to say I have found all the attention very embarrassing - which is probably the other side of the coin. Yes, the foot is painful but, compared with everything else, it's in a minor league - but people find it easy to understand because it is visible and probably something they can relate to.

It is a difficult thing to manage Louise, but probably a battle you will never win. My husband understands as far as is possible because he can see how I am from day to day and I know I am very lucky in that. I now give my Mum the edited version when she asks (a lesson which has taken me a long time to learn) and other than that I just try to play it by ear - and not to get upset if I get it wrong by saying too much - or not enough and people don't understand (or misunderstand).

Meantime, you can always share on here Louise - cos we all DO understand.

Tillyxxx

bubbadog

Hi Louise, Family can be hurtful and say things that upset. But the thing with arthritis is it can't be seen full on. No one but yourself or other suffers know what your feeling. I see it from my family, even my husband when he's stressed. You have to remember they don't mean to be cruel they just don't understand. And when you don't understand something you beome scared and act negatively towards it. That's what this site is here for, people who do understand and are here for you.

JoeB2

Hi Louise,

For what it's worth my mother is exactly the same in this regard.

Some people will never be convinced. That's human nature I'm afraid. It probably explains why there is still a Flat Earth Society (I kid you not !).

My advice would be to stop trying to convince her of anything. You know what you have, your G.P. & Rheumatologist know what you have.

I appreciate it's difficult, and it certainly shouldn't be the way it is, but I feel you are wasting energy that could be more productively employed.

I have nothing but sympathy for you and sincerely hope your mother does experience an epiphany very soon.

Arthur