sick of people thinking ra is nothing

used my mobility scooter again today to collect the shopping only to be stopped and asked what was I doing on that there for sick people and is that all that's wrong with you ,if only they were in some ones shoes with ra any way who say you cannot own your own scooter it was my late husbands and I am making use of it to save my poor old bones

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  • i know how you feel ..i often get abused when parking in disabled bays at supermarkets....they dont understand that i only manage to leave the house once or twice a week if lucky...such a cruel invisible illness

  • Ooops - just posted this in error on chogie8's post My New Wheels!!! Duh, sorry if anyone thinks they've seen it somewhere before!!

    Is this possibly where saying you have RD instead of RA could have helped? I've had & continue to have positive results using it. Only yesterday my new hairdresser queried why I asked her to cut my hair at the back so I don't have to "do" it. She asked why & I explained I have RD & limited movement & she said she'd never heard of that, told her it's also known as RA to which she said "oh I have gout too, painful isn't it"?! Replied that pain & more adding that it's an autoimmune disease (turning point & she became interested, no longer dismissive) my immune system attacks my joints, making them stiff and painful & without my meds I'd suffer more joint damage & also suffer the most awful fatigue at times & so it went, she even wanted to know what I had to take & admitted that she takes one of the meds I take (etoricoxib) but the GP only gives it to her when she gets an attack. Realisation of the difference hit her. Different to the normal client/hairdresser chitchat & she thanked me for explaining & admitted she didn't know what RD was at all & even said doubts other people do either. Told her about RA awareness week in June & she said she'd look at it with a new eyes. Result again!!

  • thanks for this post no one wants sympathy only to be accepted from what we have I think the awareness week is a good thing I never knew what ra was until I got it and still learning

  • Intended to add & just come back to me (brain fog again!) reading a reply Footdoc recently left on Cotton79's post Psioratic Arthritis Awareness post "one type of arthritis does not prevail over all others" & as such shouldn't we all, which ever form we have, use RD if we have opportunity, maybe those with Psioratic, Osteo, Reiter's et al adding something along the lines of mine shows itself specifically as ...........? The more each of us uses it to explain our specific condition under the same umbrella the more the acceptance as we all have the same underlying disease.

    Sorry if anyone thinks I'm bleating on about this it's just the change in awareness & attitude when I've used it has staggered me.

  • Hi there

    I am so with you. You are bringing clarity to a complicated situation. I have been doing just the same as you and the difference in peoples attitude is quite something. So I am now a convert to using the phrase 'Rheumatoid disease'. It really does make a difference. So I would ask everyone that the next time an opportunity should arise, and it will, just give it a try. I am sure the majority will feel that a better understanding of our problems will be realised. A good way to raise awareness!

  • Great. Strength in numbers & all that.

  • Oh dear, what is up with people?! Sorry you have to go through this.

  • I know how you feel too. The looks I get when I get out of car when parking in a disabled bay... No one will understand what we have to go through until they have it. X

  • Ye, rant about to start, if you can get in the spaces for young men playing very loud music, no disabled badge displayed taking their kids into the Shops, not using any mobility aids. I know they could have disability but then they should show the badge !!! Rant over !!

  • I've started saying I have an autoimmune disease. Gotta say too since I'm needing to use my walking stick more people are so much more nicer to me, funny that

  • I agree. When I have to use my stick most people are far more polite. I only use it when I really need to but carry a folding one in my bag if I'm going anywhere. I think calling this thing an auto immune disease is an even better idea than RD. When anyone googles it they can see what's involved.

  • I've had this many times and it makes my blood boil. In my case it's always been by the elderly who seem to think that badges should only be awarded to them. My usual reply now (which is always accompanied by a glare!) is "are you making assumptions about me.......you don't know anything about me or my health" They don't really know what to say to this. I never feel I should tell them what's wrong with me, it's really no-one's else's business. Pat xx

  • they need to mind their own business ! that's the problem , I try so hard to be " normal " sometimes I'm sure people think I'm just being baby , if only they knew what it was like , you carry on using it if you need to , x

  • Found the same with one or two people that I know regarding the 'I'm just being a baby' thing. A friend popped in to see some time ago and it just so happened that I was having a flare-up at the time. He asked me how I was, I replied (keeping it as brief as possible) that I was having a flare-up and a number of joints were really painful. His response was - oh yeah... I've had something similar, been aching all over lately - think it's due to work! I looked at him with a steely stare and calmly said... no you.haven't Bert!! He paused for a second or

    two and replied... ok wishbone I get where you're coming from.

    I must say it's a real nice feeling when you finally see the penny drop with someone you've known for a long time. :)

  • I agree. So annoying when RD's misunderstood but so gratifying when as you say the penny drops when the opportunity arises to clue up :-)

  • Even my own daughter has no idea of my plight, and someone told me that she had been making fun of me, said I walked like a gorilla and why on earth did I need a scooter, it was all in my mind! She is 42 yrs old by the way. Since being struck down with this awful disease some 8 yrs ago I know I have changed as a mom, I have struggled with every facet of my life, but she has never asked me how I feel, or ever asked me anything about RA. I asked her why she had been making fun of me and she said that I only had a bit of arthritis and I should just get on with it!! After all, she said, I did not have cancer or anything like that! It has broken my heart, we have not spoken now for nearly 9 months.

    I feel that I have outlived my usefulness to my family because my life has had to change in order to cope with my pain and fatigue. However to be treated like this by my eldest daughter has been very hard to cope with Lynda x

  • yes its difficult and hurt full when family are like that you would think they would understand I am going through the same thing .in life people cannot always cope with illness and can hurt you by there response I just try to give unconditional love and just keep going all you can do is your best.

  • Hi Jockety it upset me reading you post we all need support from family and friends it's a shame you haven't spoken to her in 9mths. She obliviously has no idea how much you are suffering and how much pain you are in could you not get someone to explain the condition to her or better still write her a letter tell her how her attidue has upset you and enclose information about RA.xx

  • Oh Lynda, your post makes me so sad for you. If she were my daughter I'd have to remind her of all the care & love you've heaped on her from the moment you held her in your arms. This really is a most awful case of our disease being misunderstood & this really is a good case of having someone walk a mile in your shoes. I'm sure you're not considered unuseful to your family but I understand you may feel that way right now because you're in a low mood at the moment. Maybe if you could explain all you go through to an intermediary, possibly another family member, & he/she spoke with her in an easy going way (by that I mean not a lecture, so she can't be defensive & not be inclined to listen) could it be possible she'd see the misconception she obviously has of RD? You say that she's your eldest daughter, could a sibling try & explain how RD affects you & the struggles you have?

    I do hope you receive some support from other members of your family.

    Stay strong.

  • Hi Jockety I am so sorry to hear that you have had this problem with your daughter it is very sad....a while back I posted a website called (the rheumatoid arthritis guy) go to his website and you will find a 60second guide to RA , it is perfect to help people understand what we have to deal with having this disease, without having to bore them about it send this to your daughter and it may just help her to understand what you go through, plus there is lots of light hearted stuff on there. Hope you manage to make it up with your daughter you must feel very hurt. ((())) Ladybird

  • Hi Ladybird, thank you for your kind thoughts. Yes, my daughter has deeply upset me, I am waiting for her to apologise but fear I might have a very long wait. I did have a look at rheumatoid arthritis guy and I am now following on Facebook as from now. Looks good. Hope my daughter gets to see some of the items I will share on there. Take care, lynda x

  • I don't know if you've ever read this, but it REALLY puts living with an invisible condition in perspective for those of us who don't know what it's like :) butyoudontlooksick.com/wpre... Hope it's helpful

  • Hi Lynda if you are following on F/B I would purposely post her the 60sec guide and tell her these are the reasons you are so hurt by her cruel behaviour towards you.....in a way you are offering her an olive branch to make amends. I know you will still love her as she is your daughter and this is why you are so hurt by all this. I have 2 daughter's and a son myself and I know I would feel so betrayed and hurt if they did this to me. I hope you can become friends again soon cos the upset and t he stress doesn't do our R/A any good. ((())) Lilian (Ladybird) :)

  • Maybe we should wear vests like service dogs so everyone will know what our problems are...

    Seriously, it is a difficult problem that will not go away: there is always someone of ignorance to make our lives difficult.

  • so true will have to get a thick skin and grin more at them

  • Thank you for kind thoughts re, my problems with my daughter. As I said, she has broken my heart with her comments implying that my health problems are all in my head. At the moment we are not in contact at all, and I don't feel I want to even try at the moment, I am so hurt. I suffered osteo arthritis and ankylosing spondylosis for many years prior to being overcome with RA. She never really accepted that this dreadful disease has the ability to knock you down just like that, and expected me to carry on like I had done previously, but that has been impossible. My son and other daughter are entirely on my side and their relationship with her is under much strain because of her complete non understanding. I do love my daughter but cannot understand how she can hurt me like this, I am hoping she might find it in herself to apologise, but I think I shall have a have a long wait.

    My illness and disability is very hard to cope with, but losing my daughter like this is so much harder to bare. Lynda x

  • You tell them where to go Lucindajune. They don't have a clue do they how painful and tiring it is to have this disease. Hugs to you.xxx

  • It's one of the hardest things to explain to people.

    Also as it's often the case, you get one auto immune, it opens the door for more.

    Consequently you have several auto immune deceases that overlap each other.

    I have difficulty separating the symptoms and making sense of it all.

    It's so depressing , you feel low and isolated.

    Then people around you ask you to explain in one sentence what's the matter with you!!

    How can you explain to others what we can't make peace with ourselves.

    I have given up trying to explain, I am ill, I have pain, my life has changed and I have to cope with that.

    I HAVE NOTHING TO PROVE to anybody and neither do you all.

    Hold your head high and tell everyone that judges you that your ill and your dealing with it as best as you can.

    Gentle hugs to all xx

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