Some disabilities donāt 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 belowš
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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.
entirely agree and this even more likely when no oneās 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 itās 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 š
The one thing that really does annoy me is when you say to someone that you have Rheumatoid Arthritis and there reply is āoh yes i have a bit of arthritis as wellā .. I actually give up now explaining the difference x
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.
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.'
We have a traffic light system. If I tell him itās 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¦..
I have ankylosing spondylitis and the charity sell a set of traffic light wristbands, to let others see what kind of day youāre having. Iām sure there are others around.
Iāve 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.
OMG you could be talking about my hubby.. he walks ahead of me and i say to him ā it looks like we have had a rowā ā¦and things like when I struggle to undo something and he says āyou have only got to askā š¤·āāļø
š¤š¤ 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 š
Yes walking ahead also drives me mad- whoeverās 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 Iāve caught my breath. And repeat.
Iām 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 youāre slowing them up. I agree it looks like youāve had a fall out to passers by.
My sister always wants to do a family long weekend, which I hate. Theyāll select what they say is a gentle walk, only to find steep inclines, which I canāt 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 donāt mind. Think Iām going to pass this year. Neither of them have ever taken the time to learn anything about my AS or adrenal insufficiency. Iām 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 Parkinsonās and was in a wheelchair so relied on her. Iām not really close to my mum, she spends her life worrying about what others think. I live 500 mile away so donāt 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. Sheās just so judgemental. Sorry off on a rant now šš
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.
Iāve had people screaming in my face before now when asking them to move on a train.. I have a āplease let me sitā lanyard and a disabled railcard.
I now say āIf anyone sitting here doesnāt have a disabled railcard can they please move, because I need to sit downā. It silences argument before it starts.
I have a disabled railcard but the train guy couldnāt move people from priority seats two weeks ago as I didnāt 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. Iām 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 didnāt 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!!!
definitely a change of name .itās 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 canāt get my head around the disease . A&E medics havenāt a clue and often say thank goodness you know what youāre talking about this is a grey area for them . Joe Public havenāt any idea between the difference from a bit of arthritis in their thumb and the daily struggle we have.
Personally feel you canāt educate them if itās classed under the umbrella term Arthritis.
I often canāt open heavy doors and have to ask for water bottles to be opened for me, I always explain but get the feeling people think Iām having a joke. After 40+ years of RA I donāt mind now.
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
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 Iād 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 āoh 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 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 āoh god well we all have arthritis, we just have to get on with itā
I donāt 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
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? '
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.
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!
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
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
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!
Iād just say Iām not disabled, l live with RA without too many problemās 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?
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.
yep Iām 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 itās a successful day.
lāve 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 donāt. I wish l could turn back the clock and just have RA but sadly canāt so make the most of what l can do rather than dwell on past times. But itās hard and itās truly dreadful that people become less able because medications donāt work and it annoys me as the question why is never asked itās 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 itās not all been plain sailing and on the whole itās 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 Iāve been to have had such a good life and am still here despite the health issues. Xx
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.
At 48 ( now 81 ) I was diagnosed with seronegative RA.
āGood news ,ā said the cheerful young rheumatologist, ā this means you wonāt suffer from all the pain , joint problems etc that you would have had if you were seropositive ā.
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 heās changed his message to his new patients .
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. š„
I totally get this. I often say that Iāve got Autoimmune disease, which sadly appears to have more impact then saying that Iāve got RA. Iām currently studying for a Fine Art degree and my final project is titled AUTOIMMUNE. Iām really trying to raise the awareness of the condition and how it impacts the sufferer.
During (and after) Covid I started saying; āI have a compromised immune systemā. Which obvs people still donāt get, but it shortened unwanted conversations. š
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
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
Letās be honestā¦.before we had RA did any of us show much interest in somebody eleseās 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 ādid a lot of sport when I was youngerā.I donāt 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 didnāt make the difference clearā¦.so again how can RA be understood by friends, employers or the public in general, if these societies donāt choose to explain the difference & the serious life changing symptoms clearly?
Militarist language was/is often used with AIDS/ Cancer. It is not at all helpful and puts the onus āto winā or ādefeatā onto the ill. š¤¬š¤¬š¤¬ You are a failure if you succumb etc etc..
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.
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!
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.
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.
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.
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.
true 100%agreed itās 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 .
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 š 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 š
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.
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.
Unfortunately everybodyās granny appears to have had a touch of arthritis so they know itās nothing much!
Even doctors though - I know itās 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 āOh it will just be a touch of osteoarthritis, itās 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 āOh my granny had thatā and āOh itāll just be a touch of osteoarthritis, itās quite common at your ageā.
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 .
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.
I have ankylosing spondylitis, and although it doesnāt have the word arthritis, I still get comments, about how they also gave spondylosis. Spondylosis is basically OA of the spine, and thereās no reasoning with them that this is an inflammatory systemic disease and very different to wear and tear. Iāve also had these people miffed that theyāre not offered the biologics and going to speak with their Dr.
I have a blue badge and donāt always need my stick, and get āthe 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 itās my lung issues that day, just to avoid potential confrontations
Donāt mention you āneed spaceā when you renew your BB!I have just renewed mine & this time received reams of information about what doesnāt qualify for needing the badgeā¦& that included āneeding 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.
yes thankfully Iāve 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 Iāve never had an issue. Iām 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.
Hah ! I love your last sentence . When we park with my Blue Badge my husband often says , āDonāt forget to limp ! ā . Yet he knows how I suffer and is really supportive .
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.
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 - Iām 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 Iād be fine with weekend surgery. I ignored him and thank goodness I did.
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 š¤· x
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 !!
- 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.
Iāve 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 donāt and maybe donāt want to know as they canāt a) be bothered or b) canāt hack it and Iāll 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 Iām not holding my breath. All best to all of us!
I lost count of the amount of times the elderly who Iāve just watched run for the bus so they didnāt 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 š. It seems Iām invisible when Iām on my scooter too. A name change wonāt make much difference I donāt suppose because if you need walking aids or a scooter and havenāt reached a ripe old age people seem to think youāve had an accident and itās only a short term thing.
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.
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 Iām so sorry to hear you have that, itās 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.
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.
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. š
I generally canāt be bothered to explain RA to people. If I can walk and my fingers arenāt swollen then everybody (including closest family) forget there is anything wrong with me. If I mention a symptom that isnāt my feet or hands then they look at me like Iām making it up. Even the rheumy said āthatās 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 Iām lazy when I say I canāt do it. Most of the time I donāt even mention it.
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 š Silver linings lol
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."š«
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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