Kirsty Young and RA: ‘It was like someone had drugged... - NRAS

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Kirsty Young and RA

Bookworm55 profile image

‘It was like someone had drugged me’ — Kirsty Young on her life-altering illness

Many on here will relate to Kirsty Young’s experience

thetimes.co.uk/article/e733...

It is likely that some people won’t be able to open this so have posted again with the most relevant part.

51 Replies

Shame that she described RA as an inflammation of the joint linings.

Indeed. As I’m always reminding people, RA is a systemic disease. I’m in the middle of a flare atm and feeling very grotty in addition to very painful joints. I keep thinking I must be ‘going down’ with something else.

CripLady profile image
CripLady in reply to Bookworm55

Agree. It needs to be more widely recognised 🤬

Interesting read, but she claims to be off all meds ? Her quote :

"I had the wrong medics and the wrong medication and they were treating things that weren’t there."

Will resonate with some us.

Thanks for posting.

I know nothing about KY…. However this article does confirm that having medical insurance or affording private treatment very early on, plus being able to give up your job & have access to the right doctors really helps cope with RA, but…..I don’t think it offers much encouragement to the newly diagnosed who have to rely on the NHS does it?

Sadly I don’t think revelations like this from celebrities help very much….maybe they do highlight the uphill fight most people with RA have…….but if you’ve got it….you know that…don’t we?

KittyJ profile image
KittyJ in reply to AgedCrone

As usual she could have added a lot more to this interview, I sometimes wonder if these people actually have the same disease as me. Shame as it gives the impression you get the right drugs and you’re fine and recover and don’t need to take anything now.

AgedCrone profile image
AgedCrone in reply to KittyJ

Yes, especially when we read on here people not even diagnosed are having to wait 18 months to see a rheumatologist and goodness knows how long after that to get test results et cetera it is very disheartening.But for once I don’t think it’s a case of inefficiency there just are not enough trained rheumatologists coming through the system

helixhelix profile image
helixhelix in reply to KittyJ

Or was it the editing? We have no idea what she actually said, and it may well have been cut out as being “too boring”.

KittyJ profile image
KittyJ in reply to helixhelix

Hmm, yes, just such a missed opportunity 😞

CripLady profile image
CripLady in reply to AgedCrone

My Rheumatology people at [NHS] Withington Hospital in Manchester were great. They have an Early Arthritis Clinic, and I used to see people there every 4 weeks. I guess it depends on where you live. As I got ‘better’ this moved to 3 monthly, and then 6 monthly. I have had the same Nurse Practitioner for the past 12 years. She’s fantastic.

CripLady profile image
CripLady in reply to AgedCrone

I agree with the ‘giving up work’ thing. When I took ‘ill health retirement’ it was such a relief (though I was very upset at the time), and sorting out my finances (DWP drama). Cutting out as much stress as humanly possible is the way to go. We are all different, but stress does make me really poorly.

AgedCrone profile image
AgedCrone in reply to CripLady

But think how someone younger, & newly diagnosed with limited means must feel reading that article…..you say you were lucky enough to take early retirement..I too had just retired when I was diagnosed …so I had an income & a roof over my head.If I had been 35 with a mortgage …I would have been devastated to read I needed to pay to see Private doctors to get the right treatment…..which is what came through to me in that article.

CripLady profile image
CripLady in reply to AgedCrone

I was 41; that was bad enough 🙁. I was also very poorly in my 20s, and spent 8 years at university, so, although I do get pensions, they are both minute and topped up with benefits ☹️. If I had been ‘well’ for another 10 years, my situation would be vastly different…

But yes, the implication that recovery is a possibility is very misleading to a lot of people. And a lot of my stress has been financial impact…. I am not married to a millionaire….

KittyJ profile image
KittyJ in reply to AgedCrone

Exactly. She was lucky enough to have the means to be able to stop work and go private. Even though I got early retirement in my mid twenties my pension didn’t even cover my mortgage let alone anything else but did exclude me from means tested benefits. I’d love to know how she doesn’t take any meds. Maybe a proper interview by NRAS is needed 😊

It was stress that triggered mine 6 years ago. I’ve been under a lot of stress for almost a year now and it’s triggered a flare in my knee which makes life hard as it’s so painful. It’s amazing how stress can effect us isn’t it.

My business and my team and clients are my world. Some are close friends now. There’s no way I could give it up as having nothing to do would make me even more stressed 😂😂 I must be insane but I’m starting another business too as a speaker🤷🏼‍♀️

I can understand how Kirsty felt having to give up Desert Island Discs that she loved.

But come on HKG…. You have got to admit… being married to a multimillionaire with all the financial advantages …might have helped her quit her job just a little bit?I’m not pleading poverty at all…..but come the day I can’t drive any more… A visit to the hospital where I see my Rheumatologist would cost over £100 in a taxi….I think I might think twice before making that appointment!

off medication sounds to good to be true

I thought that when I first read it but just looked again and she says off "most medication" so I bet that she's on DMARDS or biologicals. Shame that she didn't say that as a quick read gives the impression that lifestyle changes have done the trick which is misleading.

My thoughts too. She is giving out a completely wrong impression of RA shame on her.

Thanks for posting this. I really like Kirsty Young, and it’s good to read her story.

Gosh, I do find this article incredibly frustrating. Kirsty could have done so much good here but stating she's off almost all meds (just four years after being diagnosed, like me, in 2018) just makes me feel even more of a failure that I couldn't even reduce from 25mg to 22.5mg earlier this year and had to go back up. She says she's a boring nut about her gut biome with no more information - what has she taken, or is it managed by diet, etc etc. I do understand that this article is written for the majority of readers who do not have RA, but for those who do, it raises many more questions than it answers. That said as the saying goes 'no publicity is bad publicity' if it raises the profile of RA!!

AgedCrone profile image
AgedCrone in reply to Dobcross1

And she just happens to be going back to work this week on a programme on HM’s Jubilee….when any publicity will promote more work……

I agree Dobcross1.

Tbh, I think that it's probably easy to wax lyrical about diet etc when you've got enough money to see the best medics quickly and start the more expensive medications early on. She does mention how hard it must be for those waiting for ages on the NHS so is obviously aware of that but as you say, it does feel like a bit of a lost opportunity.

Sheila Hancock also has RA. And at 89 what she does is remarkable anyway, even without this disease!

theguardian.com/culture/202...

Interesting article. I'm surprised she's not on any medication at all now. Thanks for sharing though. x

Dobcross1 - I agree. x

Interesting. I learned Sheila Hancock had RA too.

Yes I read that too yesterday. I got the impression that she hadn’t had it very long.

There are a lot of folks who have RA. I was 30 when I was diagnosed, 34 in a few months. I lost my job and slipped into a depression, not because of the money (I was privileged to have my own company co owned by my hubby who did more while I was really ill, )so it was a 2nd charity job that I had for my identity that I lost so unceremoniously. I felt so worthless then. I was lucky to be diagnosed within 4 weeks, but I struggled with having yet another life changing illness. I honestly did not know what the future held for me. I really struggled caring for my boys. The fatigue was bone crushing. Since then I’ve had a daughter and RA with a toddler is interesting to say the least 😅😅 Yet I’m in a better place than I was 4 years ago. Even if I feel like a pharmacy most days 🤣

An interesting read, thanks for posting.

Sadly not everyone can have the luxury of giving up work like Kirsty. I’ve just turned 60 and and have been separated for 6 years. I have no option but to work, although this year I had to go down to 4 days from 5, as I just couldn’t cope. I lost over £100 a month, but I just didn’t care. I would retire tomorrow if I could, as I’m completely exhausted, I seem to spend my weekends sleeping. 😔 I have two friends who have RA, another with PMR and another with Lupus. They are the ONLY people amongst my friends who really understand, unless you have an autoimmune condition like this, people can’t really comprehend the impact on your life.

It’s a horrible disease, but we just carry on 💪 xx

Flinda profile image
Flinda in reply to Chockyuk

Like you, I couldn't afford to give up working and really struggled to work a full week, then struggled to work 25 hours a week and now, I'm surviving on a small work pension and wonder how I even managed 1 day a week at work! My income has plummeted but at least I'm not forever asleep when I'm at home. I have the gift of spending time at home doing my stuff, like Kirsty said she now has.

I don't think anybody at work believed me when they asked me how I spent my weekend ie I said I slept for 2 days - recovering!!

I used to dread that question or else give a vague humorous (more acceptable and normal) answer.

It's definitely not a sustainable way of living and people who have this awful disease should receive far more help, advice and support to understand better the possible sustainable options.

Instead, we are almost left in the dark to work everything out on our own and begin a different fight for survival, alongside fighting the disease.

It's just so exhausting!!

But I'm glad Kirsty has explained what it was like for her as it highlights how devastating the impact is of living with this thing.

I wish more celebrities would tell their story - just to show colleagues and bosses that we are not making this stuff up.

Fatigue does not equate to feeling a bit tired!

I'd be very interested to know how other celebs have found treatments, and how effective they have been.

Should we expect far more?

Should we look into the gut more?

It would be good if NRAS did more on the advanced scientific thinking, to know what we might be missing out on.

I've been diagnosed with RA since the age of 24 and I really struggle with mine. I am now 39 years old and they have had to stop the Hydroxychlorine which I only took for a year along with my Sulfasalazine, which has damaged my eyes. I'm depressed and suffer from so much stress and I work 40/42hour week. Feeling abit down at the minute. This is some of the reality of RA, my wrists are fused also which causes me pain. Waiting to hear what they can now offer in place of hydroxychlorine.

Boxerlady profile image
Boxerlady in reply to Sq16

Sorry to hear that you're struggling. Really hope that your rheumy acts quickly to try to find something which will work better for you. Please let us know how you get on. 🍀

Sq16 profile image
Sq16 in reply to Boxerlady

Thank you.

Flinda profile image
Flinda in reply to Sq16

That's so young to receive a diagnosis! I really do feel for you. If you can, I'd recommend you talk to someone from Occupational Health, who will do everything they can to support you through your work situation to reduce the stress and/or your long hours or anything else which would make your working/non-working balance more healthy.

Also, they could recommend to your employer that you would benefit seeing a counselor, to talk through how best to cope with living with RA.

Please speak out and ask for any/all help that's going.

Make sure that your employer knows the impact RA has on you and that it's classed as a disability (an invisible one).

I'm sure there'll be a treatment which is the right one for you too - in time.

Best wishes.

Chockyuk profile image
Chockyuk in reply to Sq16

I’m sorry to hear that you are struggling so much. As Flinda says below, try OH through work. My employer didn’t want me to reduce my working week until I brought in OH, the lady I spoke to was very sympathetic and supportive. I have an office based job, but again they don’t want me to WFH, even though we did very successfully during lockdown. One of my colleagues has MS, they managed to get rid of her, she took them to a Tribunal, so I think they are now a bit more wary.I can’t imagine what you’re going through working 40/42 hours a week, you must be absolutely exhausted

Xx

Eeh how the other half live. So what she got in a year is probably what we get in 15yrs on Nhs she makes it sound so easy

Yes I guess much lower chance of them forgetting to send the next appointment if you’re privately treated - as they did with me!

I wonder if that’s what as happened to me used to get appointments every six months and not had for over a year now. I just assume it because of backlog.

Well I had guessed they might have forgotten when they hadn’t sent me an appointment a few weeks after my phone appointment in Jan 2021. In the end they gave me the appointments phone number and on the second attempt (very complicated) I finally managed to book one for this August.

Well I had X-ray Jan 21 and said will discuss on next appointment still waiting lol

I do feel the article under plays how bad RA can be, compared to her fibromyalgia.

I fully understand It must be awful to have both. But RA is bad enough on it's own too.

Like so many others I have no alternative but to keep working, despite the chronic pain, reduction in mobility and constantly being knackered!

If my job had been a physical one I'd be out of work, but I wouldn't be considered disabled, so what government support could I realistically expect. Not much I suspect.

Good on Kirsty for getting the help she needed. But I don't think her story is representative of the majority of RA sufferers. Certainly not mine.

Seb

Flinda profile image
Flinda in reply to Sebastian247

Hi,I'm interested to know why you wouldn't be considered as disabled?

I have RA and managed to work full time (and then part time) but considered myself to be disabled.

My employer was reluctant to entertain most of my suggestions for reasonable adjustments so I raised a grievance at a tribunal. At first they refused to accept I was disabled but after I presented all my medical evidence they had to accept it, reluctantly.

Most of us do qualify under the definition within the Equality Act.

It's just not tested that often before a judge.

Sebastian247 profile image
Sebastian247 in reply to Flinda

Hi Flinda. That's very interesting. Well done for persevering. Just a shame you had to take it to tribunal. That can't of been easy at all.

I was thinking in terms of benefits, in case I had to give up work. I don't know much about it really. Just what I read in the news about how awful assessments for PIPs can be and navigating the benefits system generally if you are disabled.

But perhaps based on your experience it's possible to get help if things get that bad.

Seb.

KittyJ profile image
KittyJ in reply to Sebastian247

Seb you can work and claim PIP. Not everyone has a bad experience, you hear more about the bad ones because people are unhappy with them but mine was fine 😊

It’s great that she is spotlighting RA, BUT hers is a happy ending. She was able to give up work & pay for tailor made care, seeing her specialist every three weeks (I’ve seen NO ONE for I et two years!). And now it seems she’s in remission (she says she is off all her meds & feeling good!!). This is not usual. Most often the disease progresses not regresses. So, yes, I’m glad to have RA recognised. But her lovely gut health yoghurts & downward dogging isn’t gonna see me able to walk without a stick! Plus I couldn’t do a downward dog now if you paid me a million pounds! Ack! Conflicted here.

I was disappointed not to be told how she recovered which drugs she had been given

sunnyweek profile image
sunnyweek in reply to Cal48

Me too, also it wasn't mentioned that RA is systemic and can affect organs as well, not just joint linings.

Cal48 profile image
Cal48 in reply to sunnyweek

No mention of what it does to the eyes either!

sunnyweek profile image
sunnyweek in reply to Cal48

Indeed. I guess you've had eye problems, me too.

I agree that unless you personally have eye damage this is so rarely mentioned. I was suddenly taken off Hydroxychloroqine after 10 years of use. Found to have mild retinal toxicity damage, which can progress even if you’re off that drug, which came as a shock. I already have permanently extremely dry sore eyes from Sjorgens Syndrome another autoimmune condition which goes hand in hand with RA and use daytime drops and night cream which NHS don’t cover because the prescribed ones didn’t bring any relief. This causes a problem with driving as my eyes smart all the time, even reading or watching tv is uncomfortable sometimes painful and reduce my vision.

She really did RA patients a disservice by giving this awful disease such an inaccurate & fleeting description.

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