I got a shock today when I heard that one of my close friends has been speculating with other friends of mine as to whether my RA is in my head, as it was put to me today.

To put you in the picture, I have been ill for the past 18 months or so with no break. Started on Cimzia a couple of weeks ago after trying DMards to no effect. I am mostly in pain if I do anything and sometimes completely immobilized but I don't look too bad, unless you count the drawn face, the hobbling about, the inability to lift anything heavy, the swollen wrists, knees, ankles and fingers ! Don't even talk to me about the side effects from steroids and other drugs. I have a good, well respected consultant and GP. I find it unbelievable that my friends think it is a psychological problem. I suggested to one of them they read up on RA but haven't tackled the other one yet. He has been pushing me to do more things that are difficult for me and not a priority at the moment and now I know why. He thinks I am not trying hard enough, or something along those lines. If only he knew!

Sorry to go on, just needed to let off steam!

Friends you say? Hmmmm, not sure I'd want friends like that. If it was me i would have to sit them both down and have a 'chat' with them and educate them about just what RA does to us.

There is a site called 'But you don't look ill' which is a good one. I'm just off to work now but will post a link later.


Okay, back from work and found the link


http://www.butyoudontloo...y-christine-miserandino/

Hi Sally,

This is something we all have to deal with and you will find out exactly who your friends are!
If only it was "all in the mind", we might be able to cure that!
Also, once you find the right drugs to get your disease under control you will find that your "friends" think you have "got over it!"
There are also the "well meaning" people who will tell you "oh I've got a bit of that in my thumb" and the endless bits of advice to eat this or drink that and you'll be cured.
At least on here we all know what RA is and what you are going through!

Love, Doreen xx

Hi Sally,

With friends like that........................

Seriously, I`ve been in a similar situation, in that my so-called friend said I wasn`t trying hard enough to get over my RA, and should just put it out of my mind.

As others say, you could perhaps sit them down and tell it how it really is, but having said that, my "friend" said I was exaggerating! She`s not my friend these days, but my real friends are brilliant and I don`t know what I`d do without them.

Kathleen C x

are you sure they really are your friends. I have found that most of my friends have been great. This may be because they did not see me for a long time due to
us relocating and when they did see me I had gone down hill a lot and I think they had a huge shock.
It may be an idea to get some leaflets from nras on RA and let your friends read them and just say to them how upset they have made you feel but you hope these leaflets will help them understand.
I hope things get better for you as I am sure you are feeling bad enough without this

Thanks Mel and Lyn for your support.

I think part of the problem is that I underplay things as don't want to go on all the time about how much pain I am in. What my friends don't see is the hours it sometimes takes me to get up and about in the morning or the pain I am in at night. They see me out for a coffee etc. not knowing that might be all I do that day and that, even as I sit there, I am in pain and discomfort.

I'm sorry you've had bad experiences too Lyn. It is very hurtful when the people around you doubt you. I am going to try and stand up for myself and shrug off those who have let me down. I have some very good and supportive friends to focus on in the future. They deserve my friendship, not the others.

Forums are a great source of support too and thank you again.
Sally x

Thank you Maria, yes, it is always the ones who have experienced tough things in life who seem to understand. My 'friend' has had a very priviledged (spelling?) life and doesn't understand I don't have unlimited resources. I just find it amazing that someone would doubt my diagnosis. It's extraordinary. Is he saying he knows more than my consultant, GP, specialist nurse? Who knows, and now, who cares :)

Hi Sally,

I too feel appalled at peoples LACK of understanding of RA. But I was too, I must be honest trying to understand that people could be in so much pain and look so well. I remember when I was at my worst every one of my joints were affected, my hands did not move and I was crippled with the pain. I stood one day after a shower dressed in new pyjamas before getting back into bed, looking in the mirror thinking how well I did look but I was crumbling inside and the pain I was in was excruciating.

I remember thinking I am glad it was me who got this and not my husband, he was an angel to me, opened my tablets daily, fed me a drink, helped me on to my feet, brushed my hair, it was really dire but he could not have been kinder. I would have been the same but I am ashamed to admit I was of the opinion if you can't see pain It can't be that bad. BOY WAS I IN FOR A LEARNING CURVE.

These people don't understand the severity of this RA I do not think they mean to be insensitive it's their lack of knowledge that makes them say the things they do. My life changed dramatically after my disgnoses, I keep really well now but I will NEVER forget how I felt and I feel again and again when I read of how others are suffering again with it. Rise above these insensitive comments, lets hope they never experience the pain of RA, but if they do they will understand. I am really glad we have this forum with people/friends who really do understand they are a wonderful support network.

Take care and look after yourself.

Lorna xx

hi sally,

perhaps they would like to visit me and see how "in your head" ra is.

my ex husband and much of his family were like this.

some people are just not worth the effort, for those who are- try the spoon theory on them www.butyoudontlooksick.com

jenni xx

Sally, these people certainly are not friends!!! As already said, you do get to know who your real friends are. One o f mine still says that as I have osteo alongside the RA, that I must keep moving no matter what. Today I can hardly move, did she get it NO!!
Just take care of yourself x x x