#HiddenDisability šŸŒ»: Some disabilities donā€™t always... - NRAS

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#HiddenDisability šŸŒ»

Aribah-NRAS profile image
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Some disabilities donā€™t always have physical signs and symptoms can vary from day to day. Like many invisible illnesses,Ā #RheumatoidArthritisĀ comes with a number of misconceptions. One common misconception is that seeing is believing; people struggle to accept what they can't see as real.

Comment how yourĀ RA has been misconceived belowšŸ‘‡

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Mmrr profile image
Mmrr

In my experience most people misconceive RA, most of the time.

I'd like to add a significant proportion of the medical and paramedical professions have minimal education into the systemic effects of RA and immunological suppression that most of our medications cause. During a recent hospital admission the lack of knowledge of RA by staff left me aghast, one staff nurse commented that her mum had OA too, I repeated several times, I have RA then gave up. She had no idea of what I was speaking about (I was on a neurosurgical ward).

The comparison with 'ageing' and a little bit of arthritis abound.

To be more specific, the examples below have all occurred in the past few months :

My Senior Occupational Nurse friend visited, saw my lack of mobility, yet a week later commented on my FB page ' I really hope you are enjoying your walking holiday, and got to the top of that Munro'. I couldn't believe it, we were on holiday up North, but certainly not a walking holiday, or anything like it.

Roll on just a few weeks, my Advanced Nurse Practitioner friend visited me, listened to me comment how difficult it is for me to visit my mum due to the journey involved (110 miles) . Next day I got a text, would I like to meet her for lunch in one of her favourite restaurants....a 120 mile round journey.

Last week my old school friend who lives in Australia, but visited me in the UK recently, asked me on a Skype call if I would like to visit her in Australia, she had an extended holiday in May and June ? She knows how immobile I am, how much pain I am in, my wait for radio ablation of spinal nerves, my hope to have my meds changed soon, my 2 recent hospital admissions with one health issue unresolved, the fact that I struggle to visit my mum due to the journey (110 miles) and the fact that I can't get travel insurance. My jaw dropped open.

I believe the name Rheumatoid ARTHRITIS is at least in part creates the confusion. A name change would help resolve the misunderstanding. Once the word Arthritis is heard people jump to conclusions.

Madmusiclover profile image
Madmusiclover in reply to Mmrr

so agree. I tend to say Iā€™ve an autoimmune conditionā€¦:

Mmrr profile image
Mmrr in reply to Madmusiclover

Sometimes I say I have rheumatoid disease, sometimes an immunological disorder sometimes I just can't be bothered šŸ„“

in reply to Mmrr

entirely agree and this even more likely when no oneā€™s heard of the disease name like Stills. Currently having tests for liver or pancreatic cancer and GP completely dismissed it when I reminded him about AI link even though itā€™s all over Google like a rash! Even told them my Dad just died of Non Hodgkinsons Lymphoma which has a direct link to Stills and other AI and once again total dismissed. Tests pending , will lie down in darkened room until then šŸ˜‰

Mmrr profile image
Mmrr in reply to

I'm sorry to hear of how dismissive your GP is of very serious conditions. Sadly not uncommon.Best wishes to you.

julie1908 profile image
julie1908 in reply to Mmrr

The one thing that really does annoy me is when you say to someone that you have Rheumatoid Arthritis and there reply is ā€œoh yes i have a bit of arthritis as wellā€ .. I actually give up now explaining the difference x

Swimming20 profile image
Swimming20 in reply to julie1908

How true people say that to me aswell ..l reply what medication are you on ..reply back none ..answers the question ..so annoying x

AW600 profile image
AW600 in reply to julie1908

that is so true and people thinking RA and OA is basically the same really annoys me!

Paisley58 profile image
Paisley58 in reply to julie1908

ditto

bienassis profile image
bienassis in reply to Mmrr

How true, how true, Mmrr!

Completely agree with everything said in your post. The point about calling rheumatoid disease ARTHRITIS is particularly pertinent.

I come across this misunderstanding almost daily and not just with those who perhaps can't be expected to understand.

Time to change the name - officially?

bienassis

Gnarli profile image
Gnarli

As Mmrr has said. The ignorance of the disease and it's effects are ubiquitous. If, in a moment of hope, I have said that I have it the responses have been laughable. Things like 'oh I had that and it went away' or 'I had a bit of that in my toe'. I feel that unless people know of us sufferers they are ignorant and really don't get it.

Madmusiclover profile image
Madmusiclover

that Iā€™m exaggerating or making it up because I look fine!

Luludean profile image
Luludean in reply to Madmusiclover

mad music lover ā€¦. I get that all the time!! well you look alrightĀ Ā»

Like I am making it up !!! Or!!!!

Do I have to put a bag over my head??

And then you get

Ā«Ā  O, well at our/ your age we all acheĀ Ā»

I get the same response if they hear I have Persistent AF. Ā«Ā  O , it is probably just panic attacks Ā«Ā  SO damn insensitive !!

Jackie1947 profile image
Jackie1947

Just arthritis we all end up with that! That's what gets on my nerve. Rhuemtoid disease that's my take on it

Mmrr profile image
Mmrr in reply to Jackie1947

Yes, sometimes I say RD or immunological disease, sometimes I can't be bothered šŸ„ŗ

Deeb1764 profile image
Deeb1764 in reply to Mmrr

I am now saying multiple autoimmune with organ issues. Usually shuts them up or ask

in reply to Deeb1764

excellent, I shall say that too

MadBunny profile image
MadBunny

Like Gnarli, I've had people say things like 'I had it in my knee but it got better.' My husband just doesn't get it. When we're out and about, he always walks ahead of me, then stops, turns and waits for me to catch up. It really upsets me . He never gives me a hand or his arm to support me. He will also sit and watch me struggle to do something then say 'oh you should have said , I'd have done it.'

Madmusiclover profile image
Madmusiclover in reply to MadBunny

We have a traffic light system. If I tell him itā€™s an amber day he knows he has to help! Also just ask directly. Come to think of it not had any green days for agesā€¦..

MadBunny profile image
MadBunny in reply to Madmusiclover

What a good idea !

Madmusiclover profile image
Madmusiclover in reply to MadBunny

works for us!

Runrig01 profile image
Runrig01 in reply to Madmusiclover

I have ankylosing spondylitis and the charity sell a set of traffic light wristbands, to let others see what kind of day youā€™re having. Iā€™m sure there are others around.

in reply to MadBunny

Iā€™m lucky with hubby, he digs holes in the garden for me to put bedding plants in as digging is not possible at all šŸ˜€

MadBunny profile image
MadBunny in reply to

Admittedly I do try to be as independent as possible so he probably thinks I don't want helpšŸ˜Š

Medical61 profile image
Medical61 in reply to

Iā€™ve got paralysis in my left leg amongst other challenges and have been using a wheelchair for 8 years. My shoulders are shot so no longer can use crutches and carpal tunnel and cubital canal syndrome make propelling my wheelchair a challenge. I recall a few months back and my wife was strolling ahead whilst I followed behind in my wheelchair. It was a steep gradient to the pavement and the negative camber made it doubly hard as I had to stop one wheel whilst propelling the other. A group of people passed me and offered to give me a hand, but I said my wife is just ahead of me. It made me feel bad that it put her in a bad light.

julie1908 profile image
julie1908 in reply to MadBunny

OMG you could be talking about my hubby.. he walks ahead of me and i say to him ā€œ it looks like we have had a rowā€ ā€¦and things like when I struggle to undo something and he says ā€œyou have only got to askā€ šŸ¤·ā€ā™€ļø

MadBunny profile image
MadBunny in reply to julie1908

šŸ¤—šŸ¤— It's the stopping, looking back and waiting for me to catch up which really gets to me. Makes me feel inadequate. Even though I know he doesn't mean it. I tell him but it doesn't make any difference šŸ™„

Bookworm55 profile image
Bookworm55 in reply to MadBunny

Yes walking ahead also drives me mad- whoeverā€™s doing it. My main complaint with it is that the one ahead stops, waits for me to catch up and then immediately starts off again before Iā€™ve caught my breath. And repeat.

MadBunny profile image
MadBunny in reply to Bookworm55

It's only my hubby who does it šŸ™„ā˜ŗļø

Bookworm55 profile image
Bookworm55 in reply to MadBunny

I must be very slow - my sons and other relatives do it too!

Runrig01 profile image
Runrig01 in reply to Bookworm55

Iā€™m fortunate that my hubby, daughter and son-in-law are all considerate and walk at my pace. My twin sister and mother though, constantly charge on ahead, then seem peaved that youā€™re slowing them up. I agree it looks like youā€™ve had a fall out to passers by.

My sister always wants to do a family long weekend, which I hate. Theyā€™ll select what they say is a gentle walk, only to find steep inclines, which I canā€™t manage between my AS fusing my SI joints and ribs, and having lung issues because of the fusion and inflammation . Then you see the impatience on their faces, whilst pretending they donā€™t mind. Think Iā€™m going to pass this year. Neither of them have ever taken the time to learn anything about my AS or adrenal insufficiency. Iā€™m certain my dad had AS, he complained of similar issues to me, always blamed on being a shipbuilder. He begged many a time to go to Dr or A&E and my mum would always refuse, insisting there was nothing more they could do. He was only on cocodamol, but had Parkinsonā€™s and was in a wheelchair so relied on her. Iā€™m not really close to my mum, she spends her life worrying about what others think. I live 500 mile away so donā€™t see them often. I learned recently that she went away bitching about my house, and all the jobs needing done, like my skirting needing painted, and her disapproval of my taste in furnishings. She like neutrals, mirrored units and bling, everything I hate. Sheā€™s just so judgemental. Sorry off on a rant now šŸ˜‚šŸ˜‚

Deeb1764 profile image
Deeb1764

all the above

Titch55 profile image
Titch55

I was really struggling at a checkout in a large supermarket. I went to customer services and explained that I had RA and asked if someone could come and help me get my shopping into the car. Yes certainly I will call someone. A young man appears took one look at me and said we only help disabled people and walked off. I asked at customer services again, the same man came back and was told by the lady to help me. He moaned all the way to the car about people abusing the system and told me there doesn't look like there is much wrong with you!

I was travelling on a train to London. I have a 'please give this person a seat railcard' (I had to give documentary evidence from the GP that I had mobility problems to get one). I asked a business gentleman if I could sit in the disability seat he was sitting in and showed him my card, to which he replied 'there is nothing wrong with you, I'm staying here'! A lady opposite got up and gave me her seat.

in reply to Titch55

Iā€™d have kicked his shins!

MadBunny profile image
MadBunny in reply to

So would I !!!

Paula-C profile image
Paula-C in reply to Titch55

I really think you should of put a complaint into the head office of the supermarket in question. That's dreadful and uncalled for behaviour.

MadBunny profile image
MadBunny in reply to Paula-C

Yes I agree.

Titch55 profile image
Titch55 in reply to Paula-C

I emailed a complaint and apart from the bounce back email saying they had received my complaint, I heard nothing!

tyncwmmarchhywel profile image
tyncwmmarchhywel in reply to Titch55

This young kid s job would have been on the line hadn he said or done that to me.

in reply to Titch55

Iā€™ve had people screaming in my face before now when asking them to move on a train.. I have a ā€˜please let me sitā€™ lanyard and a disabled railcard.

I now say ā€œIf anyone sitting here doesnā€™t have a disabled railcard can they please move, because I need to sit downā€. It silences argument before it starts.

mld78 profile image
mld78 in reply to

I have a disabled railcard but the train guy couldnā€™t move people from priority seats two weeks ago as I didnā€™t have the blue priority card. He stood with me, helped to fill in the priority seat form on the website there and then. My card arrived on Thursday. Iā€™m glad to say a woman did rearrange all their shopping and other bags and allowed me to sit in the only spare seat. But why didnā€™t she do it when she realised people were standing? Rant over and I now have the blue priority card. Had to take a picture of my disabled railcard for evidence!!!

J1707- profile image
J1707-

definitely a change of name .itā€™s so much more than joints. I often speak to student doctors on rotation and I ask if they are interested and every time the response is NO just canā€™t get my head around the disease . A&E medics havenā€™t a clue and often say thank goodness you know what youā€™re talking about this is a grey area for them . Joe Public havenā€™t any idea between the difference from a bit of arthritis in their thumb and the daily struggle we have.

Personally feel you canā€™t educate them if itā€™s classed under the umbrella term Arthritis.

I often canā€™t open heavy doors and have to ask for water bottles to be opened for me, I always explain but get the feeling people think Iā€™m having a joke. After 40+ years of RA I donā€™t mind now.

Chrt profile image
Chrt in reply to

Yes all of the above!! But I used to be the same because my sister diagnosed with ra mid 70,s died 2004) & not myself, her kids or my mum understood. The minute I was diagnosed I told her how sorry I was, oh yes I undertand now. We could never understand how she could be ok one minute then not the next. I,ve not told many I have ra but of the few who know there are a few who did want to know so I,ve explained. Otherwise I just dont have the energy to explain to people who dont want to listen but the few I,ve told I said it is a disease & an autoimmune one at that. Who wants to petition for a name change & drop the artritis bit lol :D

Feelingpoorly profile image
Feelingpoorly

This thread had hit a nerve with me as I can relate to almost all of the comments. A couple of comments made to me stand out that Iā€™d like to shareā€¦..

Respected local optician during an eye test and seeing that I had advanced dry eyes to which I said that it was coupled with having RA saying to me ā€œoh you must go to my friend who can cure you of RA and dry eyes in an instant with her food therapy and vitamin supplements ā€œ she then lectured me on the benefits of seeing her friend for around 10 minutes until in exasperation I asked if she could please continue with the eye exam!

A friend of 50years after I told her of my diagnosis, said she totally understood and her arthritis in the knee was terrible and she was sure pain killers and a strap or two on the affected joints would get me back to normal in no time.

Another friend who I told about my diagnosis said dismissively ā€˜oh god well we all have arthritis, we just have to get on with itā€™

I donā€™t bother to talk about to anyone now as it seems pointless! My support comes from reading relevant posts on this site which have helped me enormously

Sending warmest wishes to you all ā™„ļø

in reply to Feelingpoorly

yes I agree with this entirely , my worst and most prolonged symptom is a very sore throat which no one sees!

Luludean profile image
Luludean in reply to

is prolonged sore throat a companion to RA and ankylosing spondilitis. That would explain mine!!

sunnyweek profile image
sunnyweek

When I had my retuximab infusion and the nurse took me to the disabled toilet in the wheelchair, bringing the infusion stand with us, she asked me about my condition, I told herand she replied 'what's that? '

Mmrr profile image
Mmrr in reply to sunnyweek

Was she a nurse or a carer ? Having asked you that , I had a staff nurse attend to me who didn't know the difference between RA and OA.

sunnyweek profile image
sunnyweek in reply to Mmrr

She was a nurse in the day case unit. She had no idea about RA nor knew the reasons/conditions why people were having infusions. She said they were going to have some training on why people were in the Unit. I would love a name change to make it sound a more complex condition.

lolamylo profile image
lolamylo

Fatigue=lazy, Glares from people when you are in a disabled parking bay=you dont need a blue badge cant see anything wrong with you, If you just did more exercise and walked a bit more=you would be better, If you just try to do more and not sleep all the time=you would be better and properly tired not just sleeping because you are bored!

Gnarli profile image
Gnarli in reply to lolamylo

Spot on. Only once has anyone ever been interested to know about it. One of a group of friends wanted to know details and another's Mother had had it and suffered dreadfully. I was so surprised they showed such keen interested I felt strangely validated

Mmrr profile image
Mmrr in reply to lolamylo

Sounds in some ways like my mum....

seabreezegirl profile image
seabreezegirl

Yes for sure . I have osteoarthritis in hips and knees ankles and Fibromyliga amd Lupus and stage 3 A CKD . I usnderstand.

sylvi profile image
sylvi

Because i use a scooter people know i am ill with ra. I agree people seeing me tell me i look so well if only they could see inside my body. xxx

nanny_bee71 profile image
nanny_bee71

All of the above - we try to get on as much as possible without looking for help but there is such a lack of understanding even in the medical profession

Flinda profile image
Flinda

There's a locked gate at my local park but people in wheelchairs can press a button for it to be opened, as it's a short cut into the cafe.

People without a wheelchair, but with mobility problems, are not allowed access and have to walk the long way round, at least another 100 meters or more!

When you're in real need of a seat, this can be so disappointing!

They have CCTV on the gate so can see if you're in a wheel chair.

However, they do let their own staff through, because they're staff!

Mmrr profile image
Mmrr in reply to Flinda

Jobs worth person devised those rules....with no medical knowledge.

greynot profile image
greynot in reply to Flinda

Grrr...and often that extra 100 meters is what you just can't manage...

in reply to Flinda

I noticed this s lot when I first became ill 10+ years ago. Accessible usually translated to ā€˜twice as longā€™ (at least šŸ¤¬).

medway-lady profile image
medway-lady

Iā€™d just say Iā€™m not disabled, l live with RA without too many problemā€™s because of medications so am lucky. I dislike labels as RA is a disease which is treatable for most people although sadly not all. I do think in fact it may be a catch all term as if a person is not positive for antibodies how can they have the same disease as someone who does. I have had more tests perhaps than some and have pANCA whicb I think makes make RA in a truest sense easier to treat because drugs work better. I hope one day that gene therapy can be developed but then again will it work on people sero negative?

Mmrr profile image
Mmrr in reply to medway-lady

My very able body has become seriously disabled by seronegative RA, or whatever I have.A very fit active outdoorsy 58 year old, working and all that goes with it, now 6 years on can't do anything much more than diddle about the house. Some days I can do little, my body is very disabled, I live in constant pain...my mind is mainly active I try to keep it that way, as it is all that remains of me pre RA.

J1707- profile image
J1707- in reply to Mmrr

yep Iā€™m the same as you Mmrr 6 years on my life has gone down the pan. Use to run a swimming club worked and would do a min of 9 high intensity fitness classes a week plus officiate at swimming competitions most weekends 20hrs plus on my feet all this and run a house.,all cleaning and shopping. Now if I get to my sofa and cook a dinner itā€™s a successful day.

medway-lady profile image
medway-lady in reply to Mmrr

lā€™ve had RA for over 20 years and worked without any issues and led a completely normal life, l walked up Snowden did the Posieden walk and a good, few 10 to 15 mile rambles all normal activities continued until the CKD hit and l do really understand how many do really have very real problems but that really just proves how RA is systematic and no one person experiences what anyone else does. And l do truly think that being sero positive may make it a true form of the condition whilst sero negative although treated the same is a different disease as yet unlabelled. Labelling is easy and stops the investigations into why some people respond to meds and others donā€™t. I wish l could turn back the clock and just have RA but sadly canā€™t so make the most of what l can do rather than dwell on past times. But itā€™s hard and itā€™s truly dreadful that people become less able because medications donā€™t work and it annoys me as the question why is never asked itā€™s just move on and try another. In 2016 l had blood clots in the lungs and a huge DV T probably due to RA so itā€™s not all been plain sailing and on the whole itā€™s been a long journey but l have met some nice people along the way and learnt a lot about how much l can do rather than looking back on different times. Perhaps the clots and the CKD make me think how Iā€™ve been to have had such a good life and am still here despite the health issues. Xx

Mmrr profile image
Mmrr in reply to medway-lady

I agree wholeheartedly about the distinction between sero positive and sero negative RA. My life isn't too good atm despite me having a positive attitude, every few months there is something else that I cannot do, more pain, more disability. But I'm keeping going.

Briefencounter profile image
Briefencounter in reply to Mmrr

At 48 ( now 81 ) I was diagnosed with seronegative RA.

ā€œGood news ,ā€ said the cheerful young rheumatologist, ā€œ this means you wonā€™t suffer from all the pain , joint problems etc that you would have had if you were seropositive ā€œ.

33 years later after a plate and 9 pins in my ankle , a TKR , a TER , fused wrists , crooked fingers and cSVD ( probably caused by this systemic disease ) , I wonder if heā€™s changed his message to his new patients .

Mmrr profile image
Mmrr in reply to Briefencounter

In my experience, some rheumatologist are still peddling the 'it's only seronegative RA' mantra. If you search online , the lesser seronegative story abounds too. šŸ˜„

in reply to medway-lady

*treatable for most people?? I donā€™t understand what you mean by this..

medway-lady profile image
medway-lady in reply to

If it had no medications then it would be an untreatable condition but it does as I said they work for most people sadly not for all.

in reply to medway-lady

Thanks for the clarification..

MadamePetitPois profile image
MadamePetitPois

I totally get this. I often say that Iā€™ve got Autoimmune disease, which sadly appears to have more impact then saying that Iā€™ve got RA. Iā€™m currently studying for a Fine Art degree and my final project is titled AUTOIMMUNE. Iā€™m really trying to raise the awareness of the condition and how it impacts the sufferer.

Paisley58 profile image
Paisley58 in reply to MadamePetitPois

Wishing you the best of luck and every success in all your endeavours

in reply to MadamePetitPois

These may be useful for you.. for info/ networking:

chronicillnessinclusion.org...

winvisibleblog.wordpress.com/

dadafest.co.uk/

Good luck! āœŠšŸ»ā¤ļø

in reply to

During (and after) Covid I started saying; ā€œI have a compromised immune systemā€. Which obvs people still donā€™t get, but it shortened unwanted conversations. šŸ˜Ž

Minah profile image
Minah

Receptionist , doctors and pharmacist at surgery have no time to think or treat about this hidden disability neither the pain and circumstances which a RA patient suffering so they all take it as it is a seasonal disease which will improve by resting or taking some paracetamol.They never think that delaying in diagnosis could reverse RA which mean struggling with RA and new health issues make us mentally and physically exhausted .I always get notification to take extra measure about your health as being vulnerable but when I need an advise or treatment than I always been put in long waiting time with feeling as I am over reacting or have no patience .Suffering with UTI from last three months and had seen three times pharmacies because gp not available , result zero ,seen go twice ,given two blood tests XRays go still confused.now waiting results of ct scan whic have been returned three two weeks ago but no call from surgery .calling and receiving same answer call every day in morning to book an Appiontment because there is ni availability of pre book Appiontment .I am daily reminding my self that because I cannot pay private fee so suffer anf be patient but it makes me afraid and haunt at the same time

Mmrr profile image
Mmrr in reply to Minah

šŸ˜„ so sad that in a rich country such as the UK, people are expected to suffer such as this.

Minah profile image
Minah in reply to Mmrr

yes itā€™s indeed .what I could understood from my experience and wish not a single less privileged could suffer from any type of health issues .

Luludean profile image
Luludean in reply to Minah

mƮnah . Are you on biologics? I had constant uti s when I was.

Minah profile image
Minah in reply to Luludean

yes .Taking baritinicib which is the only drug who improved my mobility at some point .And have been told not to take with uti symptoms and wait for your reports .unfortunately painkillers also cause other problems which I have been tried in RA journey .In short words I have to live without medications and pain relief till have serious symptoms eg short breath or any bleeding only could take paracetamol and a jell .Now will again call surgery to get appointments as there is no pre book appointment system available .Only daily basis appointments are given over the phone

Mmrr profile image
Mmrr in reply to Minah

What a terrible system for trying to get a GP appointment šŸ˜„

in reply to Minah

I managed to get one last week. I phoned at 0801 and was 13th in the queue šŸ¤¦šŸ»ā€ā™€ļø. I insisted on a face to face..

The GP receptionist in the past has told me to get down there at 8am to circumvent the phone queue, but this is not an option for me..

I also use email..

AgedCrone profile image
AgedCrone

Letā€™s be honestā€¦.before we had RA did any of us show much interest in somebody eleseā€™s disease called RA? I had cancer & everybody fell over themselves to offer help, but on the rare occasion I mention my RA I hardly meet anybody who knows the difference from OAā€¦ā€¦ā€¦in fact I often get asked if I ā€œdid a lot of sport when I was youngerā€.I donā€™t blame themā€¦.how can they be expected to know what RA sufferers go through?

Sadly, even most Arthritis Societies just say Arthritis in their literatureā€¦they rarely differentiateā€¦.so how can we expect anyone to know the two are very differentā€¦ā€¦.both very painful & life changingā€¦..but people in general have no idea how serious RA can be.

Even a few short years ago when Versus Arthritis was formed & there was a lot of publicity with widespread advertising with TV coverage, if I remember correctly they didnā€™t make the difference clearā€¦.so again how can RA be understood by friends, employers or the public in general, if these societies donā€™t choose to explain the difference & the serious life changing symptoms clearly?

Mmrr profile image
Mmrr in reply to AgedCrone

Hence a name change may be essential in raising awareness and why many of us don't say RA.

in reply to AgedCrone

I find Versus Arthritis incredibly annoying.

Mmrr profile image
Mmrr in reply to

I find them just awful. You have to dig long and deep to find anything on RA.

Even then a clear concise difference between RA and OA isn't given.

The name too .... versus arthritis?

in reply to Mmrr

Militarist language was/is often used with AIDS/ Cancer. It is not at all helpful and puts the onus ā€˜to winā€™ or ā€˜defeatā€™ onto the ill. šŸ¤¬šŸ¤¬šŸ¤¬ You are a failure if you succumb etc etc..

Mmrr profile image
Mmrr in reply to

Absolutely.

Sheila_G profile image
Sheila_G

Thank you for this. I agree with all that has been said. I have had the usual "my granny had that, I suppose it comes with old age." I was 51. I wholeheartedly agree that the name is misleading. When you say rheumatoid disease people say " I have heard of rheumatoid arthritis but not disease what is that," giving an opportunity to explain the difference between RA and OA. There should be a national if not international campaign to change the name and explain what it is.

madme1 profile image
madme1

Oh you're walking without your stick? Are you feeling better? You're not disabled enough, you shouldn't be parking there. You are not as bad as I am. Arthritis? That's a few aches and pains isn't it really? These are just some of the comments I've had from people who just don't get it. I have had to literally say to them, it doesn't just affect your joints, and its not just an older persons disease as people of all ages can have it. It also has a debilitating effect on your muscles So tell me what are your eyes? What is your heart?, What are your lungs. The stock reply is there is no need to be so touchy about it, or my my we are grouchy today. I reply oh yes thats another thing it affects you're moods as well!

Paisley58 profile image
Paisley58 in reply to madme1

I can relate with everything everyone has said here but I love your last line, I think I will be using that the next time I am told I am being overly sensitive or grouchy.

madme1 profile image
madme1

Its not just the physical affects though its also the affects it has on your mentality. You can be driven crazy and be completely immobilised with pain as I was at the start. Then to have someone belittle or misunderstand that pain makes it even worse, because you can then start to doubt yourself. I was in hospital with a serious chest infection and the flu and I often wonder if it was covid. They gave me a drug to treat the infection but did not tell me what it was. It had disastrous effects to the point where I was almost sectioned. That is something I've never forgotten. The devastation and fear of what's happening as well is over whelming. That's why I sometimes think people with such conditions as ours, or other things such as cancer as well as all the other curve balls daily life throws at us including bereavement where, or at some point, we've forced to become mentally stronger.

madme1 profile image
madme1 in reply to madme1

That and the fact that no one in the medical profession has the training or offers the guidance to help you deal with the mental affects. Sorry for all the responses but I feel so strongly about this.

Mmrr profile image
Mmrr in reply to madme1

I'm in Scotland, medical students have 10 days education in all musculoskeletal disorders. I assume the rest of the UK is similar.Yet MSK account for a very large proportion of a GPs time. Most, if not all GPs will have had no further training in MSK diseases before they begin practicing.

The medical education system is not fit for purpose in my view.

Minah profile image
Minah in reply to madme1

true 100%agreed itā€™s not only physically effected but also mentally a lot too because you could try to adopt your life pattern for some comfort but what about your nearest loved ones so you blame yourself for making their life also tough .

Plumcrumble profile image
Plumcrumble

To be honest over the years I've never really made a big deal about it, I was diagnosed when I was 18 and all I was concerned about was getting the drug that worked whatever they gave me, concentrating on my job with the animals and partying šŸ˜ we didn't get much help unless you went looking for it, no Internet etc.Even now I don't talk about it unless someone notices my hands which are a bit of a mess. Most people associate arthritis with elderly people, but I do think it's being recognised more as a autoimmune disease than it was. I've had it for 42 years maybe I'm bored with it aswell, although it does rear it's ugly head frequently, best wishes to everyone šŸ’•

Dobcross1 profile image
Dobcross1

Agree with all of the above. A name change is urgently needed. If I have heard 'oh I've got a touch of arthritis in my thumb' once... As others have said, my GP and medical staff in general have zero knowledge and understanding of RA. When I was diagnosed, a specialist RA nurse (obviously an old hand) said to me - don't expect any sympathy with this. If you went out of here and told people you had cancer they would be falling all over themselves to help but not with RA'. I've never forgotten that advice and several times it's stopped me falling out with thoughtless people. God knows what we have to do to raise awareness of this disease. I wish I had some answers.

Wigelia profile image
Wigelia in reply to Dobcross1

I can certainly testify to that as my first RA symptoms appeared just as I was diagnosed with endometrial cancer! RA diagnosis took a little longer though.

Fruitandnutcase profile image
Fruitandnutcase

Unfortunately everybodyā€™s granny appears to have had a touch of arthritis so they know itā€™s nothing much!

Even doctors though - I know itā€™s nothing to do with rheumatoid arthritis but when I was desperately trying to get an X-ray for agonising pelvic pain the GP I spoke to said no and ended the conversation with ā€˜Oh it will just be a touch of osteoarthritis, itā€™s quite common at your ageā€™. Turned out after three MRI scans on various parts op that area that I had a fractured sacrum amongst other nasties.

So what hope do we have when we are generally dismissed with ā€˜Oh my granny had thatā€™ and ā€˜Oh itā€™ll just be a touch of osteoarthritis, itā€™s quite common at your ageā€™.

StormySeas profile image
StormySeas

Good question and yes to all the replies! Itā€™s really helped reading how everyone else feels.

Iā€™m going back to saying rheumatoid disease. And trying not to be so ashamed and apologetic about it either šŸ˜€

GlamNana profile image
GlamNana

I completely agree. I have had RA, PA for over 40 years I do not have bent fingers . I still go out so people think you cannot have RA. I have my makeup on do my hair . So there is nothing wrong with me. They do not know the time it takes to look as if there is nothing wrong with you.

I go out one day and need to rest the next day. I just ignore people who say things like that .

greynot profile image
greynot

I've taken to saying I have Rheumatoid, and leaving off the arthritis bit. But I agree, the name gives rise to so many misconceptions. I have a lot of OA issues too.

'Oh, but you look so well...'

Runrig01 profile image
Runrig01

I have ankylosing spondylitis, and although it doesnā€™t have the word arthritis, I still get comments, about how they also gave spondylosis. Spondylosis is basically OA of the spine, and thereā€™s no reasoning with them that this is an inflammatory systemic disease and very different to wear and tear. Iā€™ve also had these people miffed that theyā€™re not offered the biologics and going to speak with their Dr.

I have a blue badge and donā€™t always need my stick, and get ā€œthe lookā€. My pelvis and spine are fused and I need the space to open the door enough to get out. Hubby prefers me to use my stick when parking in disabled bay, even if itā€™s my lung issues that day, just to avoid potential confrontations

AgedCrone profile image
AgedCrone in reply to Runrig01

Donā€™t mention you ā€œneed spaceā€ when you renew your BB!I have just renewed mine & this time received reams of information about what doesnā€™t qualify for needing the badgeā€¦& that included ā€œneeding space to open the doorā€ Apparently all councils have different qualificationsā€¦ā€¦.& I do live in an area with a very elderly population so it may just be for that reason hereā€¦.but it had also changed how far you can walk.

Runrig01 profile image
Runrig01 in reply to AgedCrone

yes thankfully Iā€™ve never mentioned it. Have enough evidence from my fusion causing mobility issues, the subluxed toes and inflammation limiting walking, and the lung issues due to ribs fused and no chest expansion that Iā€™ve never had an issue. Iā€™m also in an area with high number of elderly, who retire to the coast. Mines is due for renewal end of July so will probably reapply end of April as it generally takes around 12 weeks here.

AgedCrone profile image
AgedCrone in reply to Runrig01

That is what it said on my formā€¦but mine came back in about 10 days,& my old badge doesnā€™t expire until 23rd of this month!

Runrig01 profile image
Runrig01 in reply to AgedCrone

šŸ¤žšŸ‘

Briefencounter profile image
Briefencounter in reply to Runrig01

Hah ! I love your last sentence . When we park with my Blue Badge my husband often says , ā€œDonā€™t forget to limp ! ā€œ . Yet he knows how I suffer and is really supportive .

oldtimer2 profile image
oldtimer2

I gave a talk recently to our local u3a science group on 'When immunity goes wrong'. It was very well received - I talked about single organ diseases like type one diabetes , thyroid disease and MS, and then talked about the multi-organ disease Rheumatoid Disease and pointed out the many parts of the body that it affected. I've had lots of good feedback so it isn't always a waste of time explaining.

But yesterday evening I walked with a stick and obvious difficulty into a meeting. I sat near a chap I know who proceeded to explain in detail to me how I should exercise more to get fitter and how it had helped his 'arthritis' - he's thirty years younger than me (for a start) and has some damage to his knee after twisting it while running in the mountains. Very helpful.

Mmrr profile image
Mmrr in reply to oldtimer2

šŸ˜„

Blueskysunshine profile image
Blueskysunshine

The replies really resonate with me. Thankfully my close friends do understand my limitations and are very thoughtful.

One memory does stand out - when having my pre-op assessment before my knee replacement, the knowledgeable sister looked squarely at me and said - Iā€™m not allowing you to have this operation on a Saturday, you need to be done on a weekday, with a full staffing complement on the ward. Next up was the anaesthetist who cheerfully told me Iā€™d be fine with weekend surgery. I ignored him and thank goodness I did.

Garnacha profile image
Garnacha

I have psoriatic arthritis & at first people are taken aback but when I explain it's an autoimmune disease you can see their eyes rolling & in the main say most of what everyone else above has said.

I recently had shoulder surgery & they did an ECG beforehand, when I saw the results (taking a sneaky peak of my notes before the op) it said possible left atrial enlargement & borderline ECG.

yesterday I had a f2f with rheumatology consultant & mentioned it to him, his answer was oh I'm not an expert on this, my blood pressure has also been consistently high & when I said he replied oh you need to see your gp, I've got terrible pins & needles in my feet & legs & now also numbness in my toes particularly when walking, I've seen a podiatrist (referral from consultant) who said I've got a neuroma & insoles may help. I said to the consultant lefluminode can cause high blood pressure & pins & needles, his answer was I could stop taking it but I'll probably have a flare, no sh#t sherlock!

I'm so unhappy about yesterday's appointment & been thinking about it all night, surely he should have knowledge on internal organs such as the heart which can be affected by these autoimmune diseases aswell as the affects medication can have šŸ¤· x

Mmrr profile image
Mmrr in reply to Garnacha

It never shocks me how little people know, even those who should....or they just ignore what you say as it is too difficult

Topcar profile image
Topcar

I have RA, PMR & GCA and just like many of us have good days but more not so good days! I unfortunately injured my knee which led to advanced OA ? so need a replacement and have been referred to physio as I apparently need to strengthen my surrounding muscles before the op!! My physio who looks about 20 just doesn't get that my other conditions prevent me from doing some of the ridiculous exercises he sets as he thinks they will help with those too ! I've tried explaining I have ai disease and he said oooh 3 ai diseases bit greedy! he thought he was being funny! My family try to understand but just like some friends as well tend to think I'm not that bad as I always make the effort for my sanity really! to dress nicely and do my hair and makeup, it can take me a couple of hours and then I need a rest!!And now the blue badge I have one but people think it's my husband's as he has OA and hobbles around because he hurts ( more than me of course) they have no idea and I'm weary trying to explain about autoimmune disease if the medics can't grasp it what chance do lay folk have of understanding our limitations? A name change is definitely the way forward along with more training for medical staff !! Thanks for reading if you've got this far !!

Evie3 profile image
Evie3

people see my hands and they sayā€¦is it just in your hands šŸ˜­

Amnesiac3637 profile image
Amnesiac3637

From the over 80 replies so far

- and counting - it seems we have a mountain to climb (if only!) and we either have to lobby for a name change which is going to be unlikely considering how long the word arthritis has been in the communal psyche or we just have to be our own advocates for change among our nearest and (not so) dearest.

Iā€™ve had rheumatoid disease in all its horrible manifestations for over 30 years and have had very mixed responses from family and friends some of whom do understand totally and others who just donā€™t and maybe donā€™t want to know as they canā€™t a) be bothered or b) canā€™t hack it and Iā€™ll never change that.

Shall just carry on carrying on, enjoying what I can do with those I enjoy doing things with and hoping we can slowly educate another, future generation as to the meaning of rheumatoid arthritis but Iā€™m not holding my breath. All best to all of us!

Leics profile image
Leics

I lost count of the amount of times the elderly who Iā€™ve just watched run for the bus so they didnā€™t miss it have asked me to get out of the disabled seat so they can sit down. I think sometimes they seem to think that I have a stick and need it to help me walk and get up and down off the seat is just there because it makes me look good šŸ™„. It seems Iā€™m invisible when Iā€™m on my scooter too. A name change wonā€™t make much difference I donā€™t suppose because if you need walking aids or a scooter and havenā€™t reached a ripe old age people seem to think youā€™ve had an accident and itā€™s only a short term thing.

MadBunny profile image
MadBunny in reply to Leics

I find that having a stick makes very little difference to the way people behave towards me . I still get jostled and pushed out of the way if someone wants to get past.

Monkeysmum profile image
Monkeysmum

I agree with all the comments above, and how sad it is to read them all and hear all the different ways we are dismissed everyday. One interaction which brought it home to me was when I went for one of my COVID jabs in one of the big vaccination centres. I was explaining to the person giving the vaccination why I was eligible I.e on immune suppressants for RA, and had prepared myself for a battle ready to show evidence etc etc. Instead, she placed her hand (gloved!) on mine, looked me directly in the eyes, and said Iā€™m so sorry to hear you have that, itā€™s an absolutely dreadful disease. Turned out she had a family member who had RA. It really touched me, and honestly nearly brought me to tears. When I got back in the car I was trying to work out why it had effected me so much, and I realised it was the first time I had ever received such an empathetic response to sharing my condition with someone, instead of the usual comparisons to OA, vitamin recommendations etc etc.

MadBunny profile image
MadBunny in reply to Monkeysmum

Thats so touching to read . I can understand why it affected you like that. Its good to hear there are some lovely people out there.

Paisley58 profile image
Paisley58 in reply to MadBunny

it really does feel good to know there are good folks out there

MadBunny profile image
MadBunny in reply to Paisley58

Certainly does.

Paisley58 profile image
Paisley58 in reply to Monkeysmum

oh how wonderful, to be validated and heard

Paula-C profile image
Paula-C

When I was first diagnosed with RA (2008), I can still see my specialist nurse telling me that if I tell people I have RA they will hear one word and one word only 'arthritis'. The first person outside my immediate family that I told I had RA replied....oh, I've got that in my knee, I just take the pain killers and get on with it. I started to explain what RA was and the look on her face. I just thought to myself...Paula shut up, she thinks your a drama queen.

Several years ago in Crete was talking to a man, never mentioned I'd got RA. For some reason he started telling me he had RA in his thumb and he'd tried every drug going but nothing worked, he had to live with the pain. I questioned what he had taken, it was just pain relief. I wiped out my mtx monitoring booklet, educated him on RA. Guess what? He realised it wasn't RA but OA.

Happy5 profile image
Happy5

Such a judging book by the cover issue. I have RD some days no one realises I'm in pain, I jokingly say I'd like to put red post its on the places where I'm in pain with PAIN written on them. Other days I look unwell & frail.

On the other hand my OH is bi-polar and even some in the family flatly refuse to accept his mental health issues.

Course GPs as the name says mean they have a general health approach , so I often come up with solutions, actions I ask (almost tell ) for. They often seem relieved, not that I've seen a GP f2f for 5 years now rely on e-consult. šŸ™„

Tired-fed-up profile image
Tired-fed-up

I generally canā€™t be bothered to explain RA to people. If I can walk and my fingers arenā€™t swollen then everybody (including closest family) forget there is anything wrong with me. If I mention a symptom that isnā€™t my feet or hands then they look at me like Iā€™m making it up. Even the rheumy said ā€œthatā€™s probably OAā€ last summer when I had constant pain in my knee and struggled with steps or walking downhill. And my dad will go for an easy walk with me and then suggest walking further, uphill, and look at me like Iā€™m lazy when I say I canā€™t do it. Most of the time I donā€™t even mention it.

Paisley58 profile image
Paisley58 in reply to Tired-fed-up

can so relate

LinaM profile image
LinaM

the one advantage of my swollen out of shape , bent to the side fingers us that my illness is not invisible. I can tell people doubt me till I hold up my hands ā€¦ that usually does the trick šŸ˜‚ Silver linings lol

Paisley58 profile image
Paisley58 in reply to LinaM

so unfair that you have to go to this extreme to be believed

Paisley58 profile image
Paisley58

This is so spot on.

I have stopped explaining the difference between my arthritis and O.A.

When I am told "well you don't look sick" my response now is, "what does sick look like?" Or "oh I have a touch of the arthritis myself." "what do you mean you can't do it, just a paracetamol and you'll be fine." The one that really gets my blood boiling, "you're too young to have arthritis, what you been doing to yourself."šŸ˜«

I feel health care professionals need training on understanding R.A and other A.I diseases as they too can come with an approach of 'it's not that bad' or be down right dismissive, which my new GP practice definitely falls in that category.

In total agreement, perhaps R.A needs to be renamed because it really isn't taken seriously and I am not tired but exhausted from explaining/begging to be taken seriously especially from people (medical health care providers) who should know better.

Thank God for this space, Sorry about the rant folks, getting off my soapbox now.

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