Venting

I feel bad for thinking this and don't know if any of you agree, however I need to vent.

As someone who has arthritis and frequents forums and things quite regularly I am well aware of the limitations this disease can cause and the pain and fatigue that accompanies it. So when I overheard a colleague at work today talking to a patient about her 'arthritis' I wanted to slap her round the face. She is able bodied, can get around perfectly well and doesn't have any joint problems. I can say this quite confidently as we get on quite well and discuss things with each other regularly.

I feel like people get a little bit tired and achey sometimes when they've overdone things and give themselves a diagnosis of arthritis when they have nothing to base it on. I wish people fully understood what it's like to have this disease. I'm 20 years old and I'm having to physically drag myself out of bed to get to work, some days even having a shower is just too much of a struggle. I work 8.5 hours 5 or 6 days a week and then get home and collapse into bed again. Some nights I'm so exhausted I don't even cook dinner and my house is a tip because I do not have the energy to tidy it, whereas this lady with 'arthritis' frequently regales us with tales of how she will clean her entire house every night after work, and play football with her grandchildren. If only I could do these things!

Maybe I'm just bitter, but I do not believe a few aches and pains can justify someone saying they have a degenerative disease without any proof and to hear her flippantly saying this with no regard as to how someone with RA feels about it just goes to show how ignorant people really are about it

15 Replies

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  • I do really sympathise and I know that it must come far harder to you at 20 to hear others talking about their arthritis without having had to suffer from it in their youth too.

    However I'm going to give you my slightly different perspective on this. A lot of the time these days you wouldn't know that I had a diagnosis of an arthritic disease. This isn't because I'm in remission because I'm not. However my RA doesn't really affect my joints much presently - and may not even be RA just now - but definitely something inflammatory and autoimmune is going on and it isn't great. It is coming as much under the heading of neurology as rheumatology.

    So the elderly chap who sings next to me in choir stayed sitting in our pre- concert rehearsal this evening and I did too while the others all stood. He looked at me and said "well I've recently had a hip replacement but you look young (52!) and fit so what's your excuse?!" I smiled and told him I have RA and presently it's making me dizzy and very tired so I'm conserving energy for the concert later.

    He said "tired and dizzy - is that all eh? - it's hardly arthritis then is it?!". I didn't bother to say that Rheumatoid isn't always mechanical or point out that if I fell over with lightheadeness on standing then I might land on him which wouldn't do his new hip much good!

    There are many more invisible illnesses than arthritis, including mental health ones, cancers, which may even sometimes include attention seeking and hypochondria. None of us really know what is going on in another's mind or body.

    So feeling angry with this person isn't actually helping you feel better about your RA, your job, your life. And it doesn't sound as if she's being unpleasant to you - just talking about herself? So perhaps, after getting this off your chest here, next time she's around try to blot out what she's saying and speak to someone else. There will be reasons she's looking for attention, sympathy and praise for herself which are no reflection on your own struggles.

    You are same age as my middle son and a good example of why we need to work so hard at raising awareness that RA is so serious - not to diminish OA - but the fact that RA can affect anyone of any age sets it in the category of autoimmune diseases rather than ageing arthritis.

    You may find it helps just to call it Rheumatoid Disease as many on this forum do - and then this really isn't something this woman can diminish or adopt for herself so easily?

  • We'll I'm burning the midnight oil again,had to get up as I thought my body was going to explode it was that hot and aching all over. It's amazing the amount of people who don't understand this disease,it used to really annoy me but now I just brush it off and try and save my energy

  • Pop smith I'm with you burning the oil. Tramadol kept things manageable until 2am but now just basking in heat and ache as you describe. No one knows until they know I agree. But our immune systems are fighting too hard already and we have to save our battles!

  • Hi becky

    Sorry this colleague has upset you. I agree with Twitchy that we don't know what is going on inside anyone's body and the pain, fatigue and illness they hide. I was very good at hiding my RA when I worked and no one ever suspected there was anything wrong until I couldn't hide anymore. I have severe RA but I do have days when I could kick a ball a bit and clean my house but I would suffer afterwards and have to rest. Maybe this lady isn't getting praise and support at home. Maybe her partner ignores her arthritis do she carries on at her expense.

    If you want to speak to others your age remember Nras have network telephone volunteers that can ring you for a chat confidentially.

    Also have you thought about reducing your hours? I did that and worked 10-4 and it made such a difference. Citizens advice can help with all the legalities. Otherwise you may push yourself too far and end up giving up work altogether.

    Think about it

    Take care

    Kikideelili

  • I really feel for you and i can sure understand why your so mad. Do you work with this woman if so get her a couple of leaflets from the hospital on ra/oa and get her to read them and tell her which one you have and then tell her what your life is like. I can't do anything with out exhausting myself. I am lucky in that i have a hubby who does everything for me and a daughter who comes once a week to do some things as well. I wish i could do it myself,but i can't. If you live alone well then if you don't clear up for a few days it won't hurt darling. Could you cut back a day a week making you get a three day weekend or a day of in the week when you just sleep.

    Hugs from me.xxxx

  • You deserve a medal feeling that tired and still going into work I agree with above we should call it rheumatoid disease ,people may see there's more to it than "just achy joints"which of course we know its much more.If its posible ti reduce work by an hour in afternoon or morning depending in when you feel most tired ask ? Xx

  • Poor you. I am 70, so my problem is that most people assume it's old-age OA, especially as I have white hair. This disease aged me at least 25 years overnight, but I'm just not ready to be my mother.

    At my recent open studio, I was selling cards in aid of NRAS. I displayed a notice about RA, it being RA Awareness week last week, and I gave everyone a little card (credit card size) with a bit of info on it. NRAS sent me a bunch of them. I always carry some in my bag and hand them out if the moment is not right to give an aural explanation.

    Jora

  • I find it better to call it an auto-immune disease ( and explain where necessary it's my body is attacking itself) or Rheumatoid Disease - otherwise the problems that I had with my bone marrow could hardly be said - like Twitchytoes latest problems - to be "arthritis".

    But when I'm wearing splints - as at present - I still get lots of suggestions that I would be better off taking cider and vinegar or wearing a copper bracelet - I thank the proposer who is trying to be helpful and say that unfortunately it doesn't work for me.

  • I agree with everything that has been said. It is better to refer to it as Rheumatoid Disease than arthritis because directly you mention arthritis, everyone has got a bit of this as well! I do get very annoyed with people who just do not know the difference between RA and OA and even if you look ok they think you are fit and well! I have had RA for 40 plus years and have had several operations on my joints and are taking many drugs including Methotrexate as well as having Anti-TNF infusions every 6weeks at the hospital. However, because of the infusions I keep relatively active and appear fairly fit and well, but like everyone else with RA I have terrible flare-ups and at the end of the day and first thing in the morning I am completely useless! I have learnt to not say too much for fear of getting into a heated discussion. Life is too short and until more information is circulated in a bigger way it will never be any different! People only know what they see and are not bothered about searching for information and answer which is a shame because it is the deserving folk, like Becky and a lot of other members on this website who are suffering in more ways than one. Becky, I really hope this person sees how you are suffering and shows you the respect that you deserve. Brian x.

  • My RA is chewing up my nerves. ( we think!) It's inflammatory- I have a spine affected and my finger is hurting bad today plus my wrists.. I can imagine how you feel though. I wonder if the girl is trying to actually "BE" part of or in your world.. it's happened. They don't want to seem like life is better at their level so they fake their circumstance or exaggerate it to get you to start talking about it.. or to say that they live like you so you need to do the same work as they do.

    It's hard to say but Gosh, you are 20.. I can imagine the changes that you will see in treatment since more will be coming out in the future. I wish I would have started on medicine at your age. My spine wouldn't hurt so much. RA is weird isn't it? It attacked my skin on my leg last year where I had some surgery - we think...and now my nerves in my whole body- now who would think that? Come on RA- give me your best shot, right? I am on steroids that are equal to a good shot of cocaine right now because of what RA is doing to them. Supposedly it will stop it.

    You are 20 years old, if you do not like working there or if someone's making life hard for you there are tons of other options. There might be some money to go to school for young adults with RA available - you might get a grant- check once? Oh to be in your shoes - Lucky you -

  • Well Becky, I can sympathise completely. It's annoying in the extreme when people whine about minor aches and pains - don't they know what I'm going through? But then I kick myself... no, of course they don't. They have absolutely no idea.

    I had to smile when the rheumatologist asked me to rate my pain on a scale from 0 to 10. I said it's all relative anyway, I've had 2 kids and cancer so this is quite low on the scale, she said it's only for us to compare with next time we ask you.

    But that got me thinking, pain is like love in some ways. You simply cannot describe to someone what it's like to feel more than they've ever experienced. If the worst they've ever has is a toothache, they can't comprehend how it feels to break a leg. A person who's never had more than a few dates with a partner can never understand the depth of love between two people who've been together for 50 years, or the passion that makes a heart truly break on the passing of their child.

    That doesn't make them insensitive, or naive, or even uneducated.

    It actually makes them very lucky. It really is a roll of the dice.

    Next time she does it, my advice would be not to say anything, or bite your lip, or get annoyed. Just smile and try not to pity her.

  • I simply laugh at them and say you no nothing.

  • Bless you, I think we all feel like that sometimes. My gran has it I. Her knee, etc etc. I hope the NRAS raise awareness has done some good xxx keep strong lovely, your doing so well keeping going all those hours. I didn't and feel very annoyed sometimes xx

  • i know how you feel - I work and everything else just does not happen and people say to me well you look ok x keep smiling x x

  • Just read this and I am so sorry for you at 20 yrs old bless,I know all about fatigue as I have CLL but at such a young age its awfull, take care and sending you a virtual hug xx

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