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Why does no one understand our condition, not even some doctors.

Posted by alfagirl

11 Mar 2013

so angry right now, having a flare and suffer with chronic fatigue, i work 30 hours a week in a busy kitchen, finding it very difficult, but needs the money, had a break down on Wednesday, body said that's it cant do this any more, so i went to doctors today to get a sick note, never in my life have i ever been made to feel like a fraud ever before with RA by a professional, i call him the y dr its was y am i having a flare, y am i so tired and y do i want time off work. he had no bedside manner, no expression nothing, just y all the time, its funny how we are made to feel like this by most people who don't understand this disease, like a fraudster, god help us if professional don't understand i have no chance of getting better....

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26 comments

Phoebe

11 Mar 2013

I honestly believe that GPs are only any use for coughs, colds, sore throats and other general problems. When it comes to something complicated, many of them are clueless.
Mine used to make me so cross. But I don't let them upset me anymore, as I look at them and imagine they are a bit scared of things they don't understand. Aah! Poor man!

You must be feeling dreadful. Did you get a note? Hope so.

I can't imagine how draining it must be to work in a kitchen, all the heat and lifting and standing all the time. I couldn't do it. Does your boss know about your RA?

alfagirl

11 Mar 2013

Hi Phoebe, yes did get a note for 2 weeks, work are not very understanding, like the dr Phoebe, most people don't understand they say i look well, or another comment is im tired 2 or i have arthritis in my big toe so i know what you are going through, just wanna scream really loud, but no matter how many times you say i don't have arthritis they aren't listening. Haven't come to terms with it myself, as i have only had symptoms for 2 yrs and it took a year to get diagnosed, in the last 18 months i have deteriorated so much to the point that i have no life, it takes me all my energy to just work, im exhausted, never mind the pain in knees hips shoulders feet etc etc. i hope u are feeling OK today, thanks for listening.

rammstein79

11 Mar 2013

i get this treatment from my family, they see my medication my hands and they also ask me why and tell me theirs nothing wrong with me in which it gets my back up

alfagirl

11 Mar 2013

I am so sorry to hear that, this disease is hard enough to deal with by itself, without people thinking we are all lying, i wish they could all walk one day in our shoes, i would do any thing to have my old life back any thing.

Maddie21

11 Mar 2013

Hello

Sorry to hear you're feeling so unwell and about the lack of understanding by your GP.

I'm starting to understand that some of us do have fight our corner a bit with this condition, hope your Employer will be understanding!

Hope you feel better soon

Maddie

alfagirl

11 Mar 2013

Thanks for your reply Maddie the answer is getting people to understand this disease, making more people aware, its really hard to make people understand, i didn't know any thing about RA till i had it making people aware is the way forward,hope u are feeling well today .thanks

Maddie21

11 Mar 2013

You are so right!....I'm going to try when I feel better and got used to the meds to get involved with things that make the awareness of RA more "out there" as I admit I didn't really have much clue about it until I was diagnosed.

I'm recently diagnosed and Tilda gave me some brilliant advice....to explain my condition as a Auto Immune disease and that I have to take a rather nasty chemo drug to control it....I've tried this and it's worked especially with some of my "it's only arthritis acquaintances"!!!

Try to keep smiling and I really hope you get some rest and TLC.

Maddie xx

Phoebe

11 Mar 2013

Is there someone you can talk to at work when you go back? Could you take them a leaflet about the disease and ask for some support, or alterations to how you work?
RA is a Disability and you are entitled to support and something called "Reasonable adjustments" so that you can still manage to work.

You will find so much help on this site. I have learned so much from reading how other people have managed their problems with RA.

Make the most of your time off!

alfagirl

11 Mar 2013

Hi Phoebe i have a boss who thinks if you cant do the job then u shouldn't be there, she has already had ago at me for having hospital appointment inside works time, i am going to occupational therapy Thursday, so they can advise, me on my rights, thanks for your advice much needed,any one that know me knows i hate being at home, but my body is telling me otherwise like my lovely husband, who says its only money, my health should come first.Thank u for your lovely messages.

pip12

11 Mar 2013

I think this is one of the greatest problems that people including a lot of GP's have, they just don't understand what you are going through. When people say 'oh got a bit of arthritis' sometimes I could smack them (if I could). The pain is only one half of it, the fatigue and the general feeling of being ill and not wanting to do anything is horrendous.
Most people don't even know the difference between Rhumatoid and Osteoarthritis, it is all called arthritis and 'everybody' has a bit somewhere and the feeling of you just have to get on with it when they havn't a clue what you are going through, really makes me so mad.

I hope you are feeling better soon alfagirl, your husband is right, your health comes first, just look after yourself xxx

alfagirl

11 Mar 2013

Hi Pip u hit the nail on the head,u got it in one how we all feel,u put it into words better than i did, Lol i could smack some people 2, Hope u are feeling not to bad today xxx Thanks for your reply.

woolly

11 Mar 2013

Did you get a sick note? Your anger is totally understandable (& probably quite good for you in an odd sort of way - bottling it up can only go so far.) At least from all these responses you know you aren't the only one who gets angry! Yep, your husband has the right idea. But so hard making decisions about work when you need the money. Your GP sounds worse than useless - just rest as much as you can, so hope you feel better soon. Luce xx

alfagirl

11 Mar 2013

Thanks for your Lovely Reply Luce, hope you had much better luck with your nurse this afternoon, take care sharron xx

Dotty7

11 Mar 2013

Is yours a single GP practice? If so, change GPs. There are helpful and knowledgeable GPs out there, mine certainly is, and it makes all the difference. If there are several GPs in the practice, ask to see a different one next time. Also it may be worth printing off some basic information about RA for your current GP. I read somewhere that doctors have a shockingly small amount of time during their training on RA (and its buddies), like 2 hours or something, and may only have one or two patients in the practice with the disease. Yours may, quite simply, not actually understand RA and how it works. Appalling, but true.

I hope the two weeks off helps.
Rest and relax.
Dotty x

woolly

11 Mar 2013

You know I'm just wondering how long it took me, a very unscientific type, to gain a working knowledge of RA from the internet - a matter of hours, perhaps? Cut that in half to take account of the high levels of intelligence, motivation & experience (????) enjoyed by the average GP & there is really no excuse. This is not a rare disease.

Dotty7

11 Mar 2013

It's awful isn't it. I think the problem may come not when people admit total ignorance, but when they believe they know and therefore don't need to find out any more. Just like all the "My Granny's got a touch of that" brigade. Only worse because these people are supposed to be qualified.

"What do you call the medical student with the lowest marks in the year?"
"Doctor."

Dotty x

alfagirl

11 Mar 2013

Thanks for your Reply Dotty my usual dr is on leave this week he is fab, this dr i seen was awful we don't need gp like him. xx

anonymous

11 Mar 2013

This comment was deleted.

summer Volunteer

11 Mar 2013

I am lost for words.. think you all have said it all any way... had a weekend away and was bad three weeks ago
... the "ocd!" bint of the other couple( my chaps friends said... I HAVE some IN MY ONE FINGER .. LOOK FEEL!!!, oh and have you thought about changing your diet .. assgh

Dotty7

11 Mar 2013

Words fail me, they really do. You poor thing, did you manage to restrain yourself from giving her a smack?

Dotty xx

alfagirl

11 Mar 2013

Thank u all for your lovely reply, certainly put one large smile on my face,take care all xx

TildaT

11 Mar 2013

I think everyone has said it all but I just wanted to add to the solidarity. My GPs are great but I did have one locum telling me it was carpal tunnel, the next hiked up my dose of MTX too high so my liver went ballistic and then one told me the reason I was feeling so much nausea was because MTX was poisoning me - and the last one (very young lass) pulled the most horrible face when I told her I'd just started injecting MTX - like she'd swallowed a frog!!? I will never see a locum again unless it's a dire emergency. Tilda xx

anonymous

11 Mar 2013

This comment was deleted.

anonymous

11 Mar 2013

This comment was deleted.

alibonura

11 Mar 2013

ohhh i so know where your coming from, reading your blogg i could have written it word for word..
shameful isnt it that only us the ppl with RA understand eachother, i so get as well when you say "just cos we look ok doesnt mean we are" !!! so bluddy frustrating if ppl cant see our pain then its not there grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

i think you do amazing to work 30 hrs a wk with this terrible desease, sending you lots of gentle hugs xxxxx

miss

11 Mar 2013

oh i so feel for you. Today at work under manager said you look like you've had an accident yes i'm walking very slowly due to the fact that i'm of meds thank goddess i start them wed. I told her last week that i had to stop meds .I'm so unimportant she couldn't even remember NICE ! So i know what you mean i just want to get them by the throat and scream sorry i'm ranting. Very sorry that your GP also not so good xx

anonymous

11 Mar 2013

This comment was deleted.

miss

11 Mar 2013

Sorry delete coz comment went twice

kstinson3

13 Mar 2013

I adore my friends here and this site! My sister, 53 years old with a master's in nursing, thinks RA and it's related diseases are "no big deal." I haven't spoken to her in 3 years unless it's about father's (80 years) health. He always recuperates at my house because she refuses to take him to her house. I was so sick a few weeks ago that I told her I couldn't help or go to the hospital. Another surgery for him on Good Friday with a long recuperation so he expects to be at my house. I am a teacher, getting no pay for days off because of health. My father thinks "arthritis" is nothing. Lucky for him, he travels and dances four times a week. He demands much from me but I found peace with the new year. He's on his own with the nurse from now on. I have no regrets after a lifetime of abuse.
Without you dear people, I would not have stood up for myself. You make a phenomenal difference. I am sending big hugs to all of you. Much love from Texas!

SarahKate-NRAS

15 Mar 2013

Hi Alfagirl

I'm sorry to hear about your experience with the GP, it really does highlight the need for raising awareness of RA. In terms of explaining things to your employer and people at work I thought you might find it useful to have a look at our 'Employers Guide' booklet which you can download from our website: www.nras.org.uk/help_for_yo...

It is designed to give to your employer to explain to them exactly what RA is and how is can affect someone at work, it also includes some suggestions for how they can help you remain in work. We also produce a booklet all about working with RA which includes information about the Equality Act and employment rights so this may also be useful: www.nras.org.uk/help_for_yo...

Kind regards

Sarah Kate
NRAS

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