Slight rant but more despair at the ignorance of ones, and lack of desire for them to educate themselves before making assertive statements about treatment.
Let me briefly explain, on Saturday I went to a family gathering, long time since everyone together. Included my sister and family from Australia and my brother and his wife, live in Sussex but might as well be Australia for all the contact we have.
The dynamics are I'm the oldest, my brother 5 years after, my sister 16 years after me.
My brother asked me what's new, I reiterate had 2 hip replacements etc unable to to take my usual meds to control RA result was flares , which I needed steroid injections for. His response "ah yes need one pharmaceutical to counteract effect of the other"
I explain in a variety of ways what my illness is, how it's treated, no choice but to plod on with treatment. He then asks " what happened in the past before these meds?" My reply you died , was able to back this up with a nursing experience 40 odd years back of a woman admitted with this illness, locked into the foetal position, screaming in pain, died 3 days after admittance.
He showed no concern about how the illness effected me. but boasting only pharmaceutical meds he takes is paracetamol for headaches.
Later in a separate conversation I discover he and his wife are not vaccinated at all. He proceeded to tell me in response to my explaining as a vulnerable person I needed vaccines etc, His reply was " I'd done what I was told" ugh I just said I'm well researched in my illness and the vaccines and life is a balance of risks.
I really hope my brother continues in his good health, and never needs any of these "pharmaceutical " meds.
Did leave me staggered how unaware ones can be of what people are going through. Also had forgotten how like my dad how cantankerous he can be. lol
Hey oh as my brother would say "happy days "
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Happy5
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I too have uninformed family members and although I love them it’s really hard when you need sympathy - not asking for a lot - and you’re met with a wall of incomprehension and sometimes a change of subject as soon as possible! It’s not that they don’t know what I’ve got ( had RA for 33 years) but I don’t think anyone has taken the time to look up RA and seen how its effects can make you feel.
I can understand ignorance -if you haven’t got a disease you can’t possibly know what someone who has is facing but, when you need to say how ill you feel, you do need a receptive ear! I, thank goodness, have very good, caring friends. You know what they say - you can’t choose your family……….I think there may be lots of us in the same boat.
Unfortunately you are not going to change people’s attitude…..…it’s that word Arthritis…..it conjures up a picture of crippled old souls moaning….& don’t get me started on those terrible Versus TV Ads…that did more harm than good! I was smothered with sympathy when I had cancer……which was a walk in the park compared to RA….& that has the chance of a cure….but the common perception of RA is it’s a little finger ache…..& so far nothing has changed that feeling.
So just don’t expect any change in attitude…..because getting upset about something you can’t change ……only upsets you.
Confession…before I was diagnosed…..even being an ex nurse I didn’t fully comprehend what the future held!But in the end…it is what it is & despite Covid we live in a country where (eventually) we can access treatment without having to think how to pay for it…..imagine knowing Biologics being out of reach because of cost.I know that is PollyAnna speak….but it’s true isn’t it?
Yes agree like you even as a nurse couldn't fully comprehend the illness as with most of the diseases ones I nursed had. However as a nurse and many other types of jobs my response to ones is to listen to what they have to say about their illness, there by the grace of God etc.
Also totally thankful daily for NHS , treatment, we used to travel to Malaysia in the winters, seen the result of no NHS and not being able to afford treatment.
Yes the NHS may be on shaky ground but as I said we do eventually get seen.I have a friend in the so called affluent US who coincidentally was diagnosed with RA around the same time as me in the late 1990’s…..she had a good career & a good company medical insurance plan….but when we recently compared access/cost of very similar treatment over the years …..she really had to spend a lot more on top of the insurance pay out to get the same treatment I was entitled to….for the pittance I paid in contributions here.
But as I think most people agree it’s too late to start throwing more money …not at the service…but at the grey suits who never seem to change the way they allocate our money.
Even promising to consider social care equally within the NHS Budget seems to have fallen victim to pay increases for who knows who rather than patient care.
I’m too old to worry about it…but young people must be very aware & think about missing out on some luxuries to get either PMI, or invest in something like an ISA, for that unforeseen medical emergency.
I know !!!!! When I’m struggling to put one foot in front of the other and people ask “what’s wrong ?” I usually just say that I’ve got Rheumatoid Arthritis . Then I have to smile pleasantly when they say , “Ah yes , rheumatism . There’s a lot of it about at our age” . 😵💫🙄🥴😬
Oh No ….the correct answer is…”Oh I have a rare, blood/bone/brain (you choose) disease….& look mournful.Then when you are asked to explain…just smile weakly as if it’s too distressing to talk about. 😥
It’s amazing how interested people are in rare diseases.You just have to remember what you said….& tell everyone the same story! Tee!Hee!
Thanks for the explanation . I haven't heard of Polycythemia - there are so many peripheral problems with RD . MGUS , as you probably know , produces a rogue Monoclonal paraprotein . A very small percentage of MGUS people go on to get Myeloma so I have to be monitored - so far , so good . Yes , just heard the news and Boris' standard apology . I'm afraid I'm glued to the TV now as it's so fast moving towards a possible meltdown . 🤪
Don't let it fester or keep playing scenarios over in your head. People don't get it and no point trying. My Mum asks me every time I see here am I better even though I have explained there is no cure and actually asking me that makes me feel like I am failing without knowing it. Therefore I hardly say much now, just not great at the moment or ok for the moment and move conversation on. Virtual hug x
MPS my eldest sister gets more like Mum but won tell her she will go thro roof!
Someone I thought was a good friend did this. Contacted me to get all the juicy details on diagnosis, then ghosted me. The next time I saw him he said "So are you all better now then?". I wanted to punch him.
I'm just off the phone to my mum, she does not have any apparent interest in my health, never has, dismissive...bullying me into attending my aunts birthday evening restaurant based meal, it'snot a special birthday, just a get together....45 minutes drive each way, a big crowd, one just flying in from California the day before.
Then back to my cousin's house for drinks. A big no for me on several fronts....not least of all, I can't sit fir long due to my spinal issues .... which she knows about.....and then there is the RA too and of course the fatigue.... I'm in bed around 9 - 9.30 pm. And, they are going for a curry....my gut is problematic just now (I love a good curry, but not just now).
Couldn't you try sitting on a cushion for the drive and evening was her solution....
All caught up in own friends health issues....not very pleasant... but a straight forward hip replacement, no complications ....what a disaster...in what way mum ? I got told the story again...she had her hip replaced....
I try not to let it bother me, but it gets to me at times.
Contrast to my partner... I don't think we should go....you'll be in pain...knock on effects for days; the Covid rates are high in Scotland, lots of people, one just off a transatlantic flight ?
I'll drive you to visit your aunt in a few weeks time, when you are less sore. He looks out for me, and told my mum....no.
I sometimes wonder if something like a hip replacement is more concrete, people can identify with it, but RA is more abstract...and the dreaded arthritis word.
Glad your partner understands your illness.My mum nursed me through the initial attack of Adult onset Stills Disease when I was 17. At that time the consultant told my parents I’d be wheelchair bound for the rest of my life and I was, for a year. I’m 60 now and thankfully have never been in a wheelchair again.
If I’m out alone and buy water to drink I have to ask for it to be opened for me, people always do but reluctantly.
Friends find it odd that some days I can drive and others not and even my husband gets irritated when one day I can hoover but the next day I can’t open a letter!
It is what it is an invisible illness. Sometimes I think of wearing an “I’m pregnant tee shirt” as people do help when they think you’re expecting, trouble is at 60 I think it would raise a few eyebrows 😂.
In October 2020 I injured my leg exercising, thinking it was just a sprain and knowing hospitals were inundated with covid I sought no help. 18 months later I’m still limping and that attracts sympathy.......weird isn’t it.
I've reached the point that if I'm faced with the usual comment/question "How's the arthritis? No better?" I just reply "What arthritis?" and change the subject. I just can't go on explaining. Sometimes it does sound rather rude, I'm afraid, and does depend on my mood and the person I'm dealing with. But after 55 years it's all a bit too much now.
I use the say it straight strategy (SIS), I don't believe it to be rude as I don't shout or emphasise anything I just respond with the truth.....I like your 'what arthritis?' Comment...I'll try that 😎
Had both my hips replaced not a even how did it go response from him or his wife.In the end as many say on here build a bubble round you when dealing with ones who are not helpful
My son is wonderful and tries to help and support me, but if you asked him what’s wrong with me he’d say “just achy joints”. I don’t think anyone who hasn’t experienced it understands what it’s like, including most rheumatologists!
Absolutely agree with the rheumatologists. Whilst tyere is the full spectrum of being compassionate and people orientated the treatment is the same ...DMARDs, NSAIDs, advanced therapies throw in some non opioid or opiod analgesia and if you still complain antidepressants.
I have an identical twin sister, who if you ever mention your struggling, just says “onwards and upwards”, and changes the subject. I have AS, my mum will phone and ask how I am, but doesn’t wait fii or r an answer. She will just talk over me about her lumbar pain, and I wouldn’t understand how painful it is. She doesn’t get it’s not “just arthritis”, I have heart and lung issues due to the years of uncontrolled inflammation. We both had lung function tests, mines showed numerous issues as well as a sleep study showing I have mild sleep apnea. Her tests came back fine, you think she’d be pleased, but no she’s angry they r told her she doesn’t have sleep apnea, and doesn’t need a cpap, because her friend who shares a room on holiday, tells her she snores badly. Tried explaining snoring isn’t always associated with sleep apnea, but no she’s convinced they are all wrong. I wouldn’t mind but I can be on the phone due an hour and say nothing, but in all that time I have to listen to her health issues, and how they are so much worse than anyone else. She’s 80 this year and has never had health problems, not even high blood pressure, and dies t realise how lucky she is to have achieved that age with no issues. Sorry rant over. My hubby thankfully is wonderful and encourages me to rest and ignore the housework, or order a takeaway if too exhausted to cook, so I’m lucky to have him. 🤗
Your mum sounds very like mine...84 years old and until very recently a picture of health. She is on the phone most days to me....morbid, self centered complaints for between 45 - 60 minutes at a time , about 5 hours a week. I get a how are you ? Then I have to listen to her and her friends ailments, all so much worse than mine. I've said it isn't a competition mum, but I do suffer....but like you, be talked. over. At 84 she has the ability of a life and social life that I would quite happily take.
Yep that definitely sounds like they are twins 😂. I refuse to phone her more often than I do, and actually begrudge phoning her weekly. We were never close, she was never a mum, which sounds bad. Never gave cuddles or kisses, no bedtime stories. Her trips out whilst my dad worked were to her mum or sisters for tea and a chat, never to the park. In contrast my dad was all about family, after a hard days work he’d take us to the park, and enjoyed playing with us. My mum just focused on dressing us the same, and looking pretty, to get the comments about “the twins”. Now my dad has passed she suddenly wants to be the centre of attention. Sad thing is if she didn’t spend so much time talking about herself I probably would phone more often. When they were 70, my dad wanted a weekend away with all the family, whilst my mum cringed at that idea saying she’d rather go away on a cruise. To my dad having family around him was having the cherry on the cake. I used to be able to put the phone down and ho make a cuppa and she’d be none the wiser. However thanks to lockdown my sister introduced her to FaceTime, so now I have to look interested for the whole hour 😂😂. Like many say you can choose your friends but not your family. The hood thing to come out of it, was I was determined to be a different mum, and gave kisses and cuddles, read bedtime stories, involved in her education, and generally have a close relationship and we are like best friends. So there is always good comes out of bad. When my daughter was a toddler my mum thought it strange that she would come running back from play fir a quick kiss and cuddle before rushing off to her friends again. I can go a year not seeing my mum, and when she visits she walks past me asking if the kettles on. No cuddle, usually only a comment about my weight and telling me I need to get off the steroids. I have adrenal insufficiency so without steroids I’d be dead, as I produce no cortisol, she refuses to take any interest in my issues. My mother in- law is the complete opposite, and gets in touch after every appointment asking how things went. Oh this hells to get this all off my chest 😂😂🤗
They do indeed sound very similar, and in upbringing of children too. If you have had a mum who was interested in you as a child and has been a good companion to you throughout life it can be difficult to understand the relationship we have with our mums. I have done better with my children and have a good solid relationship with all three of them, If my mum is not telling me her health woes (minor by comparison to RA) she is criticising me or passing comment on my home of which she is rarely in these days, I keep her at arms length of my wee sanctuary.
I'm an only child which makes things even more claustrophobic.
It is food to get it off your chest with someone who understands.
Yes, I e learned to keep mine at arms length too. As you say we have both good relationships with our own kids as a result of our experience. I will say she is a slightly better grandmother than she was a mother. It wasn’t till I left home, and had work colleagues talk of their close relationships with their kids, that I started to see how different my upbringing was. I’m convinced my dad also had AS, he had severe back pain all his life, and died with the typical stooped posture. He had Parkinson’s and was wheelchair bound in his later years. He used to beg my mum to take him to hospital re his back, she refused saying there was nothing more they could give him, he was only on cocodamol. Unfortunately I live 550 mile away, and seeing it was my mum phoning, never heard of much of this till I visited and had the chance to speak with him. I sometimes think the reason she refuses to understand AS, is that she will realise how much he suffered. Take care of yourself, hope your RA is manageable and your able to enjoy life 🤗
I am sorry to hear this but as others have said some people won’t even try to understand. It’s not hard to have empathy for others whatever their condition/s but no one gets it’s completely until they get it. My hubby is wonderful but he’s never even had a headache! Dosnt know what one is??Anyway it’s so upsetting from your nearest & dearest. Sending hugs 🤗
Have you thought of a cushion, heatpad, changing your diet, dancing naked round a toadstool, yoga, swimming, herbal tea, going vegan, eating more meat, standing on your head for 20 minutes.......
My old school friend brought me over the counter anti inflammatory herbal tablets all the way from Australia on her last visit to the UK. She was sure they would help as they had helped her sports injury a few months earlier.Not wanting to offend I accepted them and said nothing. A few months later she emailed asking if they had helped as she could send me some more.
What do you say ? All done with the best intentions....but for goodness sake ...I told her then no, I hadn't taken them and reminded her I was under the care of a rheumatologist, endocrinologist and neurologist and would prefer to follow their advice and medications.
She is an IT consultant and comments on how building websites isn't as easy as people think ! But cannot seem to apply the same criteria to the infininatley more complex human body.
Unfortunately ignorance of many health issues is commonplace. I suppose there are diseases that I am not aware of but I hope I would take the time to find out about them if a member of my family or a friend had it. I think it boils down to the old adage - until you have it you can't possibly know what it is like. I think it is indifference that upsets me.
Spot on....I don't know what it is like to have a disease that I don't have, but I can appreciate that people are suffering and their quality of life has radically changed. RA seems to be particularly prone to people just not 'getting' that it a serious chronic illness with life changing consequences.
It wasn’t until I had a OH report done at work the management took me seriously. The report reiterated how the disease itself causes fatigue, so can the medications. I always try and do my hair and make up in the morning, people see me with a bit of lippy on and think she can’t be that bad.
I work with a few people who have RA, PMR and Lupus, I feel we all support each other, as we know what’s going on under our skin so to speak, it’s good to have some support and understanding in that respect.
My son is great, he asks about my medication. Recently I went to a wedding and he bought me a fancy new wooden engraved walking stick which he thought didn’t look as bad as my old one. 💕
Dreadful for you and can understand how it got you mad. Let’s hope you don’t have a family history of RA (as in my case, it was passed down through my maternal grandfathers line). Some people just don’t get it and think it’s just like arthritis.
Some of my friends were shocked at how I’ve been, others think it’s nothing and you should shut up and go away.
Thank goodness for modern medicine, my grandfather died in 1971 and only in his early 60s, a shrivelled man, who could barely walk. The only chair he could sit in to get off was a piano stool, and the only pain killer he got was disprin.
Remember that old saying ‘you can pick your friends, but not your family’.
I know it is very frustrating. I had to give up work because I couldn't meet the demands of the job. "Great" my friend says, we can now do all the things we wanted to but couldn't because you were always working. We can do this, do that, go on holiday. Woah! What planet is she on. I can barely get out of bed some days and when I do I have difficulty breathing due to interstitial lung disease. She can't understand why ' a bit of arthritis' can be so restrictive, and says what has arthritis got to do with my lungs. I try to explain but it falls on deaf ears. Infuriating. Anyway she has stopped inviting me.
That’s very sad, friends should be friends through thick and thin.I think that’s one of the things I grieve most about, is not being able to ‘keep up’ with my friends. I’m 60, so I don’t mean going out on the town, but for instance, they go on holiday, city breaks, and I just know I can’t do the walking, so I just don’t go.
I’m too fatigued most days after work to go to the theatre or anything I used to love.
I've let a few friends slip away as I was finding the demands of the friendship too great to bear. Just like you....we could do this, or that ....yet could see I could hardly stand.
I do think that it is important to call it Rheumatoid Disease, although any arthritis can be painful. I do try to explain to anyone who will listen that it is an auto-immune condition where my body defences are attacking my tissues. But relatives can be the worst, they have preconceived ideas about how you 'should' be and are not interested in you as a person (or they would keep in touch). I'm sorry that you had to put up with that and feel upset.
Not sure why you're even bothered about it. Its a situation you can't change so is best forgotten and fortunately I think rare. One thing though we are all somewhat ignorant of other peoples illnesses because we don't actually experience them. So obviously we are sympathetic but can't walk in another shoes. I have family and friends who don't have RA but do have equally serious and one is facing much bigger battle. The only thing I would add is that anyone who has not taken the vaccine is clearly a moron so why even listen to them. You can take it they are not even worth giving a second thought too. So note to self avoid this man in the future but put him in the past ignorant box.
🤣 at your "clearly a moron comment" Reason I went to the family gathering is to see my darling sister (a nurse) and family over from Australia. Hadn't seen my brother for yonks.I was replying to his "what's new with you? "
I was taken aback at how "moronic" he's become , sharing on here has been balm, which I appreciated.
I long ago accepted family don't change, not expecting it, and that will be our last contact.
So sad, so stay positive and rise above the man. I'm glad you found help here as no one should ever feel that way. Its an old saying , friends you can choose family you're stuck with. But I'm glad you saw your sister and lets hope your brother finds out the hard way that life sometimes is not as simple as he seems to think it is.
Yes family gathering was lovely. As to my brother I don't wish him ill , he's not the sort to learn even if things don't go well for him. Some people don't eh?
Sorry you had that experience sad to say its not unusual. I have a friend who although she's not in the best of health herself seems to think I'm a faker. When I described how I had to fight to get my money back from DWP she said well its tax payers money after all! As if I did not know that and I'd never paid taxes! Some people are still of the opinion that RA and all its cronies, is still something that you either only get when you are old or that it only effects the joints. I replied to my friend and said, "Well as long as I know the truth, my Consultants and the DWP know the truth, the opinion of the ignorant does not matter." She didn't have a reply.
If I’m in company,if my health comes up,I just try to keep it low profile ( I have auto immune conditions ,also have Interstitial Lung Disease.as I have shortness of breath,some people find this easier to understand.If someone asks more questions,I have started saying I can explain ,when we both fell asleep I’ll stop talking. I have found that this forum is the best place to come for empathy.as the people on the forum have knowledge and understanding.
I try not to discuss it because it really gets me down.if people ask where I am if he’s out on his own,he just says she’s having a rough day.he’s more abrupt than me.the thing that identifies people as lacking knowledge is when you say ,they are changing my medication.
Anyone who has experienced chronic illness understands what a nightmare it can be. Other people just give you a Blank stare
My best friend who has very serious health problems herself which are life threatening to say the least and has MS too had the best way to explain RA when people ask. She said just ask them to think of the worst cold or flu they’ve ever had and how rotten it made them feel, now imagine feeling that terrible every day for the rest of your life and add to that a broken arm or leg or both that never heals and that’s what a little ‘arthritis feels like. I’ve used the explanation a couple of times and it seems to have worked because I don’t get the comparisons anymore and my in-laws who don’t get it at all don’t moan about their osteoarthritis after working in the garden for hours on end, I couldn’t manage a hour without serious payback for days and weeks not just a few hours.
Dare I say it - your brother is an idiot. A stupid and insensitive one at that. Be glad you don’t have frequent contact with him - it could damage your health especially as he is unvaccinated..
My brother is a know -it -all , cruel and unpleasant idiot who along with his equally awful wife see themselves as amateur psychologists (someone I know described him as a sociopath) so to preserve my sanity I no longer have anything to do with him.
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Is it down to cost or how server you have RA.
Annoyed with my mother
Crikey!!! 20 days to go!! Team effort required here please.
salford together or not for me 
