Prize draw update and YOUR opinions please on rec... - LUPUS UK

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Prize draw update and YOUR opinions please on recent LUPUS UK/Cambridge University/Forum research

Paul_Howard
Paul_HowardAdministrator

As many of you will know, we are working closely with a team of patients, researchers and rheumatologists on research to identify how people living with lupus, and related systemic diseases, feel about their journey to diagnosis, medical relationships and overall wellbeing. The aim being to raise awareness and improve knowledge and care.

The team, led by a Cambridge University researcher, fellow lupus patient and forum member, MelanieSloan, and also consisting of several other forum members, has produced a draft of the forum analysis for your approval and comments. These can be accessed as Word and PDF files here - dropbox.com/sh/x3krjukg03dj...

Thank you to all of you who gave permission for your quotes to be used, you will see many of them in the paper. Unfortunately, there isn't enough space in this paper to use them all, but they were all used to come up with the overall 'themes' so everyone has played a big part in this.

The philosophy of the team's research is that it is carried out BY the community, so please do read the draft and share your views, either as comments on here for us all to discuss or by emailing Melanie on mas229@medschl.cam.ac.uk

This is your chance as a community to make your voices heard on a wider stage than the forum, as the finished report will be published in a medical journal and read by rheumatologists, other clinicians and policy makers. We hope this will lead to greater understanding of the challenges faced.

________________________________________________________________________________________________

On a related note, we are pleased to announce that I did the prize draw yesterday for the LISTEN study that many of you took part in, and the winners are: FIRST PRIZE of £100 to Fi and SECOND PRIZE of £50 to Katie. They have been informed of their success in the draw and given permission for us to share their first names. Thank you so much to all of you in this study and for completing your questionnaires. There will another questionnaire in 8 months and another chance to win the prize draw!

50 Replies
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Thanks Paul,

We spend a lot of time saying what needs to change when we talk amongst ourselves here.

it's such an important change to have the experiences of patients i.e us lot prioritised in a professional journal, where our clinicians can hear what its like on the other side of the desk

i've sent some further thoughts to Melanie. Hope others will too x

Thanks very much whisperit, those were very insightful and helpful thoughts and I've added some in. It's great that it's a research study and paper from ALL of us here.

If anyone has anything else to comment or add, please do feel free to discuss on here too.

Especially interesting in everyone's opinions on what title they prefer please?

A survey is definitely needed to improve diagnosis. I am interested that the findings will be shared with just rhuematology consultants. The findings also need to be shared with all departments within a hospital especially A and E. Before diagnosis I spent years being sent from one department to another. Neurology, respitory, cardiology, Ent, dermotolgy and more importantly A and E are just not interested when there is no diagnosis on your notes. Keep going to hospital when no one is interested is degrading and frustrating. Drs don't believe your ill, maybe seeing women being over emotional. As soon as there is a diagnosis then attitudes change. The people organising this are doing a brilliant job. Thank you.

whisperit
whisperit in reply to Muff20

i dont know what journal it will be published in, but no doubt anyone who is interested will be able to read it. Like you say, it'd be good if as many non-rheumys read it as possible x

Yes wherever it is published it will be made available to all on open access through a medical literature database.

That's why it's important we get the title right to catch people's interest.

Does anyone here have a preference for the first part of the title please?

Our choices currently (but happy to take any other suggestions from here - because it is everyone's study) are:

'But you don't look ill' (something we all hear a lot!)

'Did my illness make me this unwell or did my battle to be heard make me this unwell?' (which expresses very well the difficult journeys to diagnosis and how that can have a lasting effect on physical and mental health)

Thanks! :)

I love the 'But you don't look ill' but think it sounds a bit catchier as 'But you don't look sick'... Or maybe that's just me...

Or what about 'The importance of being heard: A qualitative analysis of LUPUS UK online forum conversations'. ?? A play on The Importance of Being Earnest... 😄

Oh I REALLY like that one! Great idea BookishVibes :)

Anyone else got any ideas/preferences please?

stiff19
stiff19 in reply to MelanieSloan

Hear when listening, see when looking

MelanieSloan
MelanieSloan in reply to stiff19

That's very true stiff. There's a good quote in the paper from a lady who said she was talking and it was as if her words were having no impact at all. Do these results fit with your experiences?

stiff19
stiff19 in reply to MelanieSloan

Sadly yes. Still undiagnosed other than unfitting to all fibro. Altered life for 2 years , intermittent breathing probs told overweight after being told not enough oxygen in blood and rheumy would treat, clear bloods ( not that I’d know) hard arms thigh just told don’t know, skin told uticaria, but doesn’t go, face distorted/ eye probs told Bell’s palsy, ruled out by facial specialist who has referred to neuro but gp, insisted bells still, see another gp they said blepharitis, optician said def not blepharitis, so good said fnd. Covid halted neuro appointment. Now eye pain on chewing. Swellings , white fingers , well multiple symptoms Too many to listcoming and going, and just fobbed off as told bloods clear but for constant low vit d iron and sometimes inflammation. Hydroxy helped , I found they helped After they stopped them but the rheumY and gp told ME they didn’t. Life has been hell, the sTress adding to it. It’s very hard to respect a profession there to help when treated appallingly, and with no choice but to put yourself in that position in searching for help. It’s like playing Russian roulette. I have seen a couple of docs, ent we’re great just out of their field but still willing to refer to someone else facial and neuro as could see problems and even said he thinks a disease rather than single problem but didn’t know what. I feel the ignorance of other consultants , rheumys especially fob off and lead others down wrong path, because I had the audacity to speak up and complain that they shouldn’t write I’ve had things tested that never took place and that it’s not ok to be told to get on with it there’s people with cancer worse off.

There are good consultants but it should not be a game of luck. It’s not just being told you don’t look ill, I was sent to rheumy straight away when arm solid and thigh , she said this isn’t fibro (yay I know that) , but I don’t know what it is, discharged with fibro.

Shame on them , I’d welcome them to live with me when symptoms rear when I can’t live normally. The caring profession just doesn’t care.

Sorry but feel so strongly that when normal life is altered to such degrees it’s just not good enough .

Yes poor lady her words ring true, I find it demoralising, it affects the patient AND the family, And just too many people are treated in this shameful way and no one has to answer for it 🤷‍♀️ If I disrespected a medical professional I’d be struck off, I am disrespected and worse but who is held responsible.

The saddest thing is neuro said you’ve been referred to neurology as no one else has answers( have they looked other than diagnosing fibro as do not know in their own words), and only because of your face.😡 my face is a symptom of a multiple set of symptoms, not listened to or interested in, because it’s easier to discharge and wait for emergency.

Thank goodness you do the work you do, Thankyou 🙏 I Hope it will bring around change, it’s nice to be heard .

Foggyme
Foggyme in reply to stiff19

I want to like your reply stiff19 but it’s impossible - how on earth can I like what you say!! So, liking on the basis that I like you.

I perfectly understand what you’re saying - the same happened to me just yesterday. Not listening, not hearing when I spoke...and cutting in so often I could never finish what I was saying...so any current medical ‘picture’ remains unexplained and incomplete. Saying this just so you’ll know you’re not alone - it’s not you! And what a damning statement that is!!

Reading your posts and replies about how you're being treated (or, more pertinently, not treated) is heartbreaking and I’m so sorry this is happening to you.

Shame on them indeed...with a double helping!

And thank goodness for the far too rare ones who do listen, care, and try to help (doing their bleep bleep jobs?).

I so admire your determination to keep on keeping on. Today, I’m taking a leaf out of your book. Thank you.

With hugs xx

stiff19
stiff19 in reply to Foggyme

Thankyou foggyme 🙏 dont admire me , my determination is more a desperation, I give up in between but they’re breaks needed for sanity but my keeping on is in hope that I might find that allusive doc and be seen and heard. Diaries and pics are as much for my own sanity as never the time or interest shown in them but I can prove to myself that I’m not crazy and remember for when the fatigue and fog hits. If I was told they didn’t have the answers AFTER doing what they could and listening then I may be accepting but not just being waived off like a bad smell to acknowledge symptoms which came together rather than compartment them all may help , what good is one problem at a time when this isn’t like that Too ill to be well and Too well to be ill 🤷‍♀️ Why wait for more damage is not to prevent that damage better 🤷‍♀️

My determination is my body telling me, the couple of docs Who confirmed I’m Not crazy and don’t jump on the fob off diagnosis, and the forum support.

Good luck foggyme, so sorry we have to use those terms of good luck , it shouldn’t boil down to that, not nowadays.

Best wishes my thoughts are with you 🤗

panda2
panda2 in reply to MelanieSloan

'But you don't look ill' is definitely my vote. It caught my eye immediately -- even before I'd increased the font size to be able to read it properly. 😄

This is really valuable work you have done! You've represented this community so wonderfully well.

Panda x

MelanieSloan
MelanieSloan in reply to panda2

Thanks Panda, we've still got a little way to go to make into final version, but it's really important to us that we've represented the community accurately and it helps raise awareness of the issues most important to the majority here. So that's very helpful to hear you feel it's represented the community well - thank you for taking the time to read it :)

'But you don't look ill' seems to be the most popular so far!

stiff19
stiff19 in reply to panda2

I like it too but it’s about being heard, it’s about a whhole picture not just looking. I’ve been a cknowledgec looking but not asked anything not heard not listened to.

It needs them to do , it needs to address their needs of practicing better, but you don’t look ill is just a reiteration of many attitudes.

‘The multiples of one’ because multiple symptoms one diagnosis or ‘address the multiples of one‘ or seeing and hearing the multiples of one. Also to not give multiple diagnosis for one problem or miltiple years of people searching . Many ways to look at multiples. Or ‘don’t multiply the multiples‘ 🤷‍♀️

' You're driving Lupus patients insane '

( Complex Discriminatory behaviour by Doctors within medical settings etc. )

Or the effects of complex discriminatory behaviour within medical settings.....etc.

Just brain storming.

' The invalid or invisable patient '

Its tricky with - did my battle with diagnosis - make me unwell. While trauma does effect us physically and mentally -- (unfortunately some Doctors may see us as having fixed high strung personalties rather it being a product of trauma and their behaviour being a cause ( something they would have trouble coming to terms with.....?

With me its been medical interest in the mind body connections in large hospital departments ( esp. Neurology and Rheumatology) that has often gotten in the way of treatment. The paper adresses the conversion disorder problem - but the second title hints of trauma causing illness. ( which it may 🙄)

Somatisisation and mind body connections are worthy research - but it's also a loophole for them to pat you on the head and tell you get a psychologist when you need medical help. It's a problem because of the current massive medical / psychological interest in the area.

I saw a psychological research article on Doctors and narrsism. While those that have a touch of it are all extraordinarily happy to accept that they're colleagues suffer from it - Doctors who have these traits can't see it in themselves.

These types at least may not be as put off by a more - 'in their face' title and conclusion. (?)

Really interesting thoughts thanks Freckle, I agree with foggyme that the title is so important, and actually the point you make about it then being able to be attributed to psychological causes if we use the second 'did my battle to be heard make me this unwell'? is extremely valid - and i think unfortunately rules out this very good quote as a title? Like you say, it's not what we're saying but how it may be misconstrued by those who are inclined to attribute too many things to 'psychological causes', We all know the battle for diagnosis does have significant and persisting psychological damage - but we don't want that taken in the wrong context.

Thanks Freckle, you've made that much clearer, you always give such great feedback, so good to feel that this whole community is involved as part of the team to raise awareness :)

Thanks Melanie 🙂. - and thank YOU and everybody involved in getting our voices out there. It's so important that these issues are recognised and addressed as the level of suffering out there is profound.

Both titles are great - but the - 'you look so well' one kind of sums up just how superficial - and all too human - and non medical the Doctor reaction can be. Even when it's said in first interaction (Dr.) politeness - it's almost a cue that help isn't coming.

So many un - useable titles and conclusions come to mind 😁

' If only you'd just do you're job ' pops into my head at many appointments.

I think you might be having trouble coming up with a conclusion because you've already said everything pretty perfectly !

Some things that did occur to me - Tips for Doctors as part of the conclusion. How to integrate this research into Doctors independent practice. *or just as rambling thoughts: -

It's the sheer level of trauma related exhaustion or just plain fatigue that accumulates over time - having to be you're own advocate and diagnostition - having to do both the Doctor's - and the medical admin work yourself ( eg making sure all specialists have all letters and pathology, interpreting you're own pathology - self referring - having to decide which of multiple conflicting opinions are correct......having to try and learn so much medical information when you're not qualified its not you're area of interest and you could be having a life ? over years on end without a break, without being paid - or without having much real power to control you're own path within the medical system.

Grinding medical trauma can lead to patients just walking away from care - temporarily or permanently knowing full well it will lead to more disability and death.

Challenge them to imagine the level of distress that would lead up to this ?

Stress the importantance of a Doctor taking legitimate confident qualified control over care to allievate these culmulative burdens - while being open and clear about whats going on and being collaborative.

If they're going to validate and be supportive - it must be genuine - otherwise it becomes medically reckless and a far more insidious form of invalidation and will lead to further physisian distrust and further illness. If they can't genuinely manage respect and validation - refer us on to somebody else.

Also encourage them to say the magic words " I don't know ( why you're sick ) - let me refer you on to somebody who might "

* Also life saving: advocating on the patients behalf in settings of multiple Doctor input - ie: the importance of taking a stand against the suptle bullying / invalidation. Don't become part of the pack.

Stress how important it is for the individual Doctor to take individual responsibility - to take a stand and advocate for us, because the probability is - nobody else in their medical cluster will do it. ( this literally saved me once / had a neuropsychiatrist soundly tell off my GP and medical team - telling them they were the problem - not me. It lead to some much needed treatment.

Recognise the unqualified psychobabble of colleagues for what it is. They are not qualified psychics or mind readers (or psychologists). Profound psychological assumptions by Doctors who come into contact with a patient for 20 minutes, tops - are not helpful.

* Encourage them not be sheep when it comes to senior Doctors opinions or the opinions of the group.

Demand sensible and humane responses from colleagues in all settings. Help heal toxic medical cultures. (They must hate this culture as much as we do ? )

Take the time to think about what the patient has said - the validity and objectivity of this being inately first hand and thus more legititimate than that of an person looking on - no matter how degrees he/she - has.

Why would we continue to make things up ? for years on end ? - keep coming back to Doctors ? when it's traumatic for us to do so. There's only one reason.

Encourage their sense of medical objectivity - and individuality ( being special 🙃 ) as apposed to just reading and believing letters that's prone to subjective or sociological bias and honest mistakes.

Ask them to go against training and think independent of hierachy.

Apeal to their sense of purpose. Tell them to be heroic and take a stand.

That's great ideas Freckle, maybe we need a leaflet co-written with LUPUS UK and patients - 'advice to doctors'?

All the young medical students I get sent to teach are so very keen to listen, learn and help that maybe things are changing? I presented this, and our earlier papers to Cambridge researchers, GPs and other doctors, and they were tangibly shocked. The questions I received afterwards were all about what they could do better for patients in that diagnostic uncertainty stage, so physician education is the key as many will be keen to not cause the damage, but just don't know the depths of it maybe?

Maybe an educational video for doctors showing good/bad consultations starring the forum members??

Its so great what you're doing over there ! - not that I want Doctors to be horrified - but its a good sign that they're taking the research seriously. Given that we/I (?) essentially have to suck up to them to save our own lives - it would be a shock to learn about our real state of mind.

Here I get the impression that younger Doctors are often far more open and empathetic than their seniors. It might be a genuine generational difference. A lot of people comment here that generally speaking the younger generation here are kinder and more empathetic. Lets hope its not a case of the difficulties of being a Doctor that grinds them down.

I'd be really interested in learning how you teach Doctors these issues. I'm pretty sure there's a huge need here for the same thing. (and I do have some antique teaching qualifications going to waste)........ for years have wondered whether its possible - and have thought about doing it / approaching a University etc.

I'd love to give them a lecture or two. : )

I think educational video's showing good and bad consultations - with forum members would be perfect - as well as leaflets. You could add some testimonials - perhaps in the form of interviews of forum members who have really been through the trauma mill - to get through to Dr's the depths of despair that can happen ? Perhaps a documentary type presentation to provide some context?

Figuring out how the majority of Doctors prefer to take in information is important if you have to choose between teaching options, tools and time constraints.

(If memory serves - mixing verbal/written/ and number information - with visual presentations sort of covers most brain types) but perhaps the majority of Doctors prefer to take information in a specific way ?

In teaching settings - you could get some brave volunteers to role play with these medical students live ? Perhaps they could also role reversal - so Lupies could give them a taste of what bad, impatient or frustrated Doctoring is like. God knows we've all got enough - material in our memories to do this. It may not be very therapeutic it would be for us though ?

Foggyme
Foggyme in reply to Freckle1000

Bravo Freckle1000...well said 👏👏👏.

Love all your replies in this thread ⭐️xx

Freckle1000
Freckle1000 in reply to Foggyme

Thanlyou Foggy - 👋 the feeling mutual

🙂

X

Muff20
Muff20 in reply to MelanieSloan

All your tests are normal, there's nothing wrong with you!

That's the most repeat sentence I have heard over 7 years as my husband holds me up!

MelanieSloan
MelanieSloan in reply to Muff20

That's a good one Muff20, I think it's a commonly heard phrase from people on the diagnostic journey. I hope you're closer to getting some answers now.

Muff20
Muff20 in reply to MelanieSloan

Melanie Sloane 7 years in and only just being listened to. Very vague diagnosis and only just started on basic meds due to 'normal' blood tests. Trying to get the complications sorted in other departments still an on going battle. My urgent lung test from last year is in a few weeks. I am sure it will be normal! But still struggle to get up the stairs or go for a decent walk without collasping and sleeping for hours. Even small tasks feel like a marathon. This time if it's normal I am going to ask for a scan on lungs and heart. I suspect something like pulmonary hypertension, let's see if they listen. Unfortunately if I get a normal test I am just discharged and I just wait another few years before someone says let's check. They will only do 1 test at a time and won't do more if it's normal. I just don't get that. They won't look for another cause. Any tips gratefully received 😁

MelanieSloan
MelanieSloan in reply to Muff20

Sorry to hear this Muff20, as you can see from this research you are definitely not alone in this difficult diagnostic journey. Especially difficult for those people who have negative blood results (which many do, often because they are not looking at all the possible tests and because blood results can be negative then become positive or vice versa). I think our main finding from talking to lots of patients and the top lupus specialists is to find a rheumatologist who looks at the bigger picture, who really listens to your symptoms and keeps trying to get to the bottom of the cause.

Here is our first paper on something similar if it helps, especially the test result part. I know some people have given their GP and rheumatologist copies to try and show them that it's so important for patients and finding the correct diagnosis to look beyond 'typical' bloods and to really listen.

academic.oup.com/rheumap/ar...

Best wishes and I hope you get there soon. This community is great, so if you've got any specific questions, doing a post about it should get you lots of advice and support :)

Interesting report drawing together many discussions from this site.

Thanks Hamptons, do you think there's anything important we've missed? Or anything that is the most important finding from this community point of view to add to the conclusion please?

I think the key issues are around the need for joined up medical support. There needs to be someone overseeing and coordinating as so many Lupus patients cross over so many services. Being referred to different people with the new person having no idea why you are there. We spend so much time explaining our story - this should not happen. My treatment changed when a GP took control and liaised with everyone. Since then we all know why I have appointments. Sadly, she has just left my practice.

Also, training for GPs in autoimmune illness, as it is often the younger doctors who have a better handle on the complexity and diversity of autoimmune illnesses. Many people wait too long for diagnosis due to lack of knowledge. Hoping to meet that one enlightened GP. GPS are key to good treatment so need to be educated.

We also need consistency of services across the country as it is a postcode lottery as to whether there are rheumatologists but also whether you can have a referral to support services, OT, podiatry, physio. Many patients end up paying for much of their own treatment as we only get a generic 6 week block which is ridiculous for a life long condition.

The second big area is benefits, so many people on here report the same things, good interviews then no pip given. Our symptoms are sporadic but life impacting. Every day may not be a horrendous day but we live with symptoms every day, Lupus alters our lives. However, the non medical staff at DFE make judgements. Despite putting in medical evidence from our teams who feel we need support, a non medical practitioner can say no. PIP is meant to support people working or not working with medical issues to live an independent life - it is not a disability payment, so we should not need to have our level of disability rated. It is meant to support and enhance the lives of people with chronic Illness. The process is humiliating and discriminatory and LUpus patients are often made to feel like liars.

This is the same for blue badges, huge numbers on here have had claims rejected despite putting in medical evidence identifying need.

The report was good and I like that it’s anecdotal. The coverage of issues is broad but not unwieldy.

something needs to change as for many on this page Lupus destroys life as they knew it for the rest of us it certainly alters it dramatically. We fall through the gaps on everything. we pay for our prescriptions as we are not ill enough, for many this is a huge amount each month, but we cannot get PIP as we are not ill enough. Yet, many lose jobs as they are too ill, families break up because of the stress of being too ill.

Thank you for your time compiling this report and trying to raise awareness for us.

Krazykat26
Krazykat26 in reply to Hamptons

Well said Hamptons 👏👏👏🌈😽 Xx

But you don’t look ill -for title. As they say if I had a penny for every time I heard that...

Hi Paul and MelanieSloan .

Thanks so much for sharing this on the forum. It's so wonderful to know that this is going to be published in a reputable medical journal. So many of us have been 'unheard' and struggled - in our numerous and various ways - in our diagnostic journeys, so to see this in print (when it arrives there 🙂) in a place where rheumatologist read is just fantastic. Well done and thank you to all concerned.

Melanie, you ask for opinions about titles...that's a really tough one (I've copied the two options below for anyone reading)!

But you don’t look ill’: A qualitative analysis of LUPUS UK online forum

conversations

Or

‘Did my illness make me this unwell or did my battle to be heard make me

this unwell?’: A qualitative analysis of the LUPUS UK forum

In truth, I don't know which I prefer.

But one thought I do have is that many of us have been confronted by doctors who dislike it when we 'google', looking for answers...and are perhaps not always complimentary about the use of online fora, little understanding how much knowledge and understanding of our own conditions can be improved through participation in these groups. And, of course, how support from others can make such a difference to us all.

So...I'm thinking...would the very people (rheumy’s in particular) who could benefit from reading this paper (those who some of us meet and move away from in the search of better understanding...and doctoring)...would those people be put-off by by the mention of conversations from and 'online forum' (not worthy of their lofty attention) - and tutt tutt off, then turn away? Don't know.

So in both titles...perhaps refer to 'A quantitive analysis of LupusUK support forum conversations'. Draws the focus away from mistaken impressions of online internet google (crazy) nonsense and explicitly locates snd foregrounds with the weight of an active reputable charity? (Or perhaps even refer to 'members support forum' - Though of course, it’s a public access forum, so not to all who use the forum are members of LupusUK 🤔).

I like the short 'snappiness' of 'but you don't look ill' which also encapsulates what many have been told so often - including by doctors who tell us that - even though we feel like death and have trouble standing and speaking...and a QoL that hovers around zero! Or the other equally annoying ‘you look really well'...then written to all in the post consultation letter (I saw 'x' in my clinic today and she/he looked really well' 🤷‍♀️).

Also - the first posits either an implicit question ('But you don’t look ill') ...or it could be a statement...whilst the second asks an explicit question (Did my illness make me this unwell or did my battle to be heard make me

this unwell?). The first is open ended and posits the concept of 'exploration', whilst the second sets up a dichotomy based on state of illness v state of doctoring (for want of a better way of putting it). Does this make a difference?

Thinking of this purely from the perspective of the intended audience (who the paper is aimed at and who 'we' want to read it)...do the different titles unconsciously influence a potential reader in different ways and sway their decision to pay attention and read the paper...or not? 🤔

I've really no idea...and still don't 'know' which title I prefer...but I never can make a decision...leaning slightly towards the first... (it strikes right to the heart of the problem(s) many of us encounter ... then again 🤷‍♀️🤣🤣🤣

Its so tough because titles really do make a difference...perhaps often in ways that are often barely perceptible. Be very interested to hear what others think.

I'm going to go back and read the paper again and will mail any comments to Melanie, it that's okay?

Exciting work and much needed...thank you again to all concerned, and in particular to LupusUK for providing the funding to make this work possible 👏👏 xx

MelanieSloan
MelanieSloan in reply to Foggyme

Those are great thoughts thanks Foggyme, especially about how our target audience will react - and then maybe engage/not engage - due to the title.

Anyone else had time to read itm and thoughts on title and conclusion especially? This is our chance to make an impact as a community and have voices heard, so please do read and comment if you have time.

Thanks for printing the results of this important research. For some reason, I can't read it properly in dropbox. Both formats keep jumping making it impossible.

I'd just like to add that I think the strapline 'but you don't look ill' would be better as it's catchy and very eye-catching. It needs to be, to draw attention to it by doctors and consultants who don't have a lot of time.

Its been wonderful to be part of research that could really make a much needed difference to our care!.

Keep as well and safe as possible, Melanie and Paul. Xx

Foggyme
Foggyme in reply to misty14

Hi Misty14...just a thought...if you access the document via Dropbox and then save a local copy to your hard drive via Word (or whatever WP package you use)...you may be able to read it that way 🤞. Or you could try saving it locally to your hard drive as a PDF? 🤔

misty14
misty14 in reply to Foggyme

Thanks foggyme, will give it a go. Had a similar thought after I'd posted!. Hope your keeping well as possible and safe. Xx

MelanieSloan
MelanieSloan in reply to misty14

Hello misty, did you manage to transfer the report into something readable? I've had a couple of people email with the same problem, so I could copy and paste some of it onto here if that's easier?

misty14
misty14 in reply to MelanieSloan

Hi Melanie

I've just tried to save the report onto my computer and it doesn't work. Yes, please then to your copy and paste offer as I do want to read it. Many thanks. Xx

MelanieSloan
MelanieSloan in reply to misty14

Hi Misty, I've pasted it onto the responses on this thread so hopefully you can see it now? (It hasn't managed to do the tables so doesn't look quite right but you should be able to read it hopefully!)

Foggyme
Foggyme in reply to misty14

Battling on misty14 🤣.

So heartening so see forum voices getting to print...and across the desks of of those who are so vital to our health and well-being.

Fingers crossed for some much need change for so many of us 🤞xx

misty14
misty14 in reply to Foggyme

Glad you are foggyme. I'm really hopeful that this important research will shock these Consultants into change that we so desperately need .Some may not realise how they're coming across and treating us . Keep battling, safe and well. Xx

Hi, several people have contacted me to say they're struggling with accessing the dropbox so here is the draft results section for anyone to read and comment on please. (The tables haven't transferred well and will obviously look a little smarter and 'table-like' in the real version!) Remember this is just a draft and we will take into account the views of everyone here before we write the final version so do please add yours in!

RESULTS SECTION

‘But you don’t look ill’: A qualitative analysis of LUPUS UK online forum conversations

Or

‘Did my illness make me this unwell or did my battle to be heard make me this unwell?’: A qualitative analysis of the LUPUS UK forum

Results

The overarching theme is Invalidation in multiple domains of forum members’ lives. Further themes of Uncertainty, Medical (mis)communication and misunderstandings, Navigating health systems and Resilience and Support were identified.

The six most frequent types of posts (as a % of total posts) were 1) asking for advice on symptoms, 18% 2) reports of negative medical appointments/ interactions, 17% 3) medication/ test results queries, 15% 4) general advice given/sought, 13% 5) emotional/ mental health/struggling to cope, 8% 6) search for diagnosis, 7%.

When discussing medical interactions, the ratio of ‘positive’ to ‘negative’ posts was 1:6.5 i.e. posts discussing negative medical interactions were six and a half times more frequent than those describing positive interactions.

Invalidation – medical

In addition to ensuring appropriate support and treatment, a diagnosis is widely felt to confer personal, medical and social acceptance, yet delays and misdiagnoses are frequently reported.

Whilst many members have severe manifestations of the disease including organ damage, early symptoms reported on the forum are often non-specific, such as migrating pain, severe fatigue, fevers and rashes. A desire for physicians to persist in ‘joining the dots’ in pursuit of the correct initial diagnosis is frequently expressed. Although some achieve prompt diagnosis, the diagnostic journey is widely reported to be invalidating and distressing, with words including ‘shame’, ‘guilt’, ‘unheard’, ‘dismissed’, ‘desperation’, ’fear’, ‘rejected’, ‘abandoned’ frequently occurring, along with reports of a loss of dignity and self-worth.

Some forum posts detail how individual physicians provided compassionate support and validation during the years in the ‘diagnostic wilderness’. However, a more frequent type of post is when the continued search for a diagnosis is reported to lead to misdiagnoses of health anxiety/hypochondria, psychosomatic or mental health issues. Posts detailing these misdiagnoses often express great distress and distrust, and a perception that self-reported symptoms are not always believed or validated, even after an SLE diagnosis has been made.

Table 1

Table 1 – Medical Invalidation/validation quotes

The importance of viewing symptoms holistically in achieving a diagnosis

The sense of blackness that would pass over me at appointments, fearing the nothing wrong statement or just ‘anxiety’. The despair of walking away with no help still feeling very ill and with no life. Just that one consultant who looks deeper and changes things for the better… When the dots are joined up it makes a big difference to quality of life. There are some great dedicated drs out there and they really are trying very hard to help us (Female, UK, 50s)

My final dx was very quick…thanks to an amazingly observant GP – but in hindsight I realised I had had lupus for years before that but because the symptoms all appeared separately nobody pieced the jigsaw together Lupus is notoriously hard to diagnose because it affects everybody differently and there are so many different symptoms (Female, 70s)

The ‘fight’ for validation of multi-system symptoms

You’re fine and then suddenly something is wrong and you know it, but instead of a straightforward test and answer, you have to fight to be believed, then it goes this way and that from one department to another and back again and not everyone is on the same page and you have to explain everything to every consultant every time… (Female, England, 50s)

The common response of ‘relief’ and validation on diagnosis

For me it took about 10 years to diagnosis…I kept thinking I was just a tired unmotivated person. It was a relief to get the diagnosis because you stop thinking you are crazy or imagining symptoms (Female, US, 60s)

The psychological benefits of validation during the – often prolonged- diagnostic uncertainty phase

[GP] was the best example of a compassionate, intelligent and very wise Dr giving me the wonderful care and sympathy despite no definitive diagnosis. A positive Dr gives as much psychological support as any drug (Female, UK, 60s)

Residual distress and anger towards physician(s) due to disbelief during the diagnostic journey

Did my illness make me this unwell or did my battle to be heard make me this unwell, maybe the battle just depletes us… I just completed a self referral for counselling. I think now I have some answers it’s time I dealt with the problems this journey has caused me. I’ve got such a build up of hate and anger towards 1 doctor! (Female, England, 30s)

My life has been very hard because of being fobbed off. Doing better but so very angry at doctors (Female, UK, 60s)

Persisting changes in patient behaviours from invalidating diagnostic journeys

Even today, despite being in the care of a wonderful rheumy, the fear of being disbelieved is a real problem for me so I tend to either shut down and not explain myself or over justify … (Female, England, 50s)

Invalidation - societal

The frequent lack of medical clarity, a widespread lack of knowledge about the disease and the invisibility of many symptoms results in posts about limited understanding and disbelief in the reality and severity of symptoms from patient contacts and wider society, with members often being told ‘’but you don’t look ill’’ This causes difficulties with family, friends, work, and school, and there are posts about relationships being severely challenged and sometimes failing.

Applying for, and using, disabled badges and welfare benefits is another area where members fear and receive negative reactions. Great hardship and distress is reported from the disbelief and difficulty in obtaining financial support, perceived to be influenced by the invisibility of many symptoms and lack of medical clarity.

Forum members express views that they feel disadvantaged compared to more visible or widely understood conditions such as diabetes, hypothyroidism. cancer and RA, in terms of treatment, medical, and social support systems.

Invalidation - self

The consequences of the organic disease itself are considerable. Some members express a deep sadness that they feel they are a reduced version of their previous self. Many are unable to work, socialise, or fulfil their caring roles as they would like. Forum members with young children commonly discuss feeling guilt and lowered self-worth. Managing and accepting these chronic diseases, medications, limitations and building relationships with physicians is often felt to be hindered by traumatic diagnostic journeys and by having a diagnosis that remains subject to progression and uncertainty.

In addition, some characteristic symptoms exacerbate these difficulties. For example, fatigue is regularly described as extremely debilitating and isolating, predominately due to causing an inability to participate fully in life, but also due to the incomprehensibility to those who have not personally experienced it. Physicians and people without chronic diseases expressing, or implying, doubt that lupus fatigue could be far more profound than ordinary tiredness can leave members feeling inadequate or self-indulgent.

Reductions in physical abilities are also often compounded by cognitive impairment, causing difficulties in work and relationships. Changes to appearance caused by the disease itself (for example, skin involvement) and from medications (particularly steroids) are also found to be distressing and highly damaging to self-esteem.

These features can be compounded by an internalisation of the invalidating attitudes and behaviours of others. Many report that the initial disbelief they encountered from clinicians made them doubt their own judgement - even their sanity. The vast majority of forum posts following a diagnosis are expressing a feeling of great relief of having an explanation for their symptoms; of validation and often vindication.

Table 2 – Societal and Self – invalidation

Invalidation and loss of dignity from difficulties obtaining welfare (personal Independence Payments – PIP) disability benefits

The whole (PIP) process is degrading and mentally painful. Why is it a matter of guilty until proven innocent I don’t know. Maybe we’ve moved beyond the ‘treated with dignity and respect’ mantra..the feeling of being thought of as a scam artist or downright liar is worse than losing the money (Female, England, 60s)

My PIP was stopped, we are barely surviving…British gas are on my tail…motability given me a date to reclaim my car. I am tired, the way and manner the PIP rug is pulled off one is horrible. I want to work but I’m not well enough...the stress that comes with the benefits system, slowly chips your life away even before the lupus gets to you. (Female, UK, 30s)

Common views of lack of understanding and societal support for lupus compared to more well-known diseases

I feel ashamed that I’ve thought it myself, that cancer would be better…it has such a huge lobby (researchers, charities, specialist status in law…) and MOST OF ALL, everyone has empathy for someone with cancer. (Female, Scotland, 50s)

Impact of the changes to appearance and reduction in quality of life for patients and their families

The weight gain, hair loss, teeth loss. On and on and on! I feel so pathetic, and ugly, and embarrassed by my appearance, I try to walk tall and act like I don’t care, but I do. It’s humiliating. The giving up all the activities I love. Missing out on so much and feeling I’m ruining my husband’s life too. (Female, USA, 60s)

The effects of the frequent over-whelming fatigue and subsequent guilt and self-invalidation

Feel like the worst parent in the world, my poor kids…I’m sat there literally dying from fatigue…. It’s like wasting life …I just feel like giving up…I feel so useless and look at the mess in the house and the kids in their pjs all day and feel like a useless mum. (Female, England, 40s)

Suicidal thoughts and a loss of self-worth from lack of diagnosis and support

I’ve been in a very low place too when nobody seemed to understand what was wrong with me and worse still didn’t seem to care!! I felt worthless. I too thought of ending my life and had to get emergency counselling as well as medication for severe depression. (female, Scotland, 60s)

Feelings of worthlessness from invalidation and loss of former identity

At what point does one's use in the world expire with this disease. So, if it takes away my love of walking, writing, thinking, functioning, being free, spending quality time with my daughter, what is left of 'me' and do I become a 'burden'…lost and worthless...my quality of life is slowly dropping away - everything that I am seems to be disappearing in this horrible set of conditions I have and the awful way we have to prod and poke the medical profession to help. (Female, UK, 50s)

Uncertainty

Living with an unpredictable multi-system disease subject to relapsing, remission, progression and evolution of symptoms causes great uncertainty and difficulties in planning and managing lives daily and long-term.

A stable and unchanging diagnosis is widely considered as being important to acceptance. Uncertainty seems especially difficult to accept by the newly diagnosed, and they are often guided by supportive posts from moderators and experienced members.

A perceived lack of consistency in diagnostic criteria and terminology – even within the same rheumatology department - creates great uncertainty and insecurity amongst patients. There are multiple reports where a diagnosis has been removed or changed, and life-changing medications withdrawn, perceived to be due to a change of rheumatologist or test results, despite symptoms remaining unchanged.

Medical (mis)communications and misunderstandings

Members report basic misunderstandings of the disease, both by themselves and physicians, especially in the early stages of diagnosis. Although some receive clear explanations, many feel they are given limited information. The highest frequency of posts involves requests for clarification of test results, medications and symptoms.

The contents of face-to-face communication, clinic letters and reports are frequently discussed. Explicit acknowledgement of the patient’s perspective is seen as a key component of valued communication and enhances the perception that the clinician’s assessments are correct. A failure to acknowledge patient concerns and to include the patient when sharing clinical reports is often identified as a source of dissatisfaction.

Miscommunication may underlie other concerns around diagnosis. Labels such as UCTD and ‘incomplete’ lupus are sometimes felt to be poorly explained and not a ‘proper’ diagnosis. Whilst reassuring to some, the term ‘mild’ lupus is felt to be dismissive by many who report that, although they understand it may mean non-organ threatening, it feels undermining, given the impact of symptoms on their lives.

Many members accrue additional symptoms and autoimmune diagnoses over time and largely accept that is the nature of autoimmunity. Some are given non-organic or non-inflammatory diagnoses such as fibromyalgia, functional disorders or CFS/ME, usually as co-diagnoses, and can feel this is an accurate representation of some symptoms. However, many strongly believe these are misdiagnoses and an invalidation of symptoms they feel are caused by their primary autoimmune disease. These members tend to report that they are given with little discussion, objective evidence or scientific rationale. Consequently, many write that these diagnoses are ‘fobbing off’ or ‘dustbin’ diagnoses that lead to low expectations and reduced treatment options.

Table 3 – Uncertainty and medical (mis)communications and misunderstandings

The desire for a named and acknowledged disease to explain life-changing symptoms

I just find it frustrating not to have a name for the disease that has pretty much ruined my life. (Female, UK, 30s)

Difficulties from changing diagnoses

So after being told I had lupus, telling my employer and getting the sack over it, a 2nd rheumatologist said it was UCTD. No one has bothered explaining anything. (Female, Wales, 30s)

Great appreciation for physicians managing diagnostic uncertainty compassionately

He went on to say sorry… it gives you no answer but lovely to meet you and I wish you well and hope you find the doctor with the answers, I’m sure it’s there it’s just knowing who to see. So still no answers but treated like a human being… could have hugged him... just plain honesty and empathy and it was a heavenly change of experience. (Female, Uk, 50s)

Frequent misunderstandings of these diseases leading to diagnostic delays and misdiagnoses

(GP) said if I had lupus my kidneys would be involved. (Female, Canada, 60s)

He [GP] hadn’t heard of the dsDNA test… I was prescribed antidepressants…after frequent visits he concluded ‘you’re a glass empty kind of person’. (Female, Scotland, 50s)

Difficulties interpreting and/or accessing test results

I don’t even know what tests each doctor has done. If I don’t ask they either don’t tell me or dazzle me with stuff I have no idea about they may as well be speaking Chinese. (Female, Scotland, 50s)

If a GP cannot interpret a result, that’s their problem- they shouldn’t use that as an excuse to withhold it from me. Likewise for a consultant to withhold a result because they think I cannot be trusted with it is paternalism gone mad…I cannot tell you how much better I feel having got the blood results in my hand – even if they aren’t the best. Being denied information about your own illness is completely undermining- and wrong. (Male, Wales, 50s)

The importance to patients of compassionate, attentive communication verbally and in writing

They (neurologist and neuro-opthalmologist) didn’t pay any attention to what the symptoms meant for me and I felt as if I was speaking but my words were silent- no impact whatsoever. (Female, UK, 50s)

I’ve just received my rheumy review letter and am really down and very tearful...feel hopeless and helpless suddenly. I’ve plummeted on reading this cold letter…I know we are a miniscule (and clearly forgettable) person in their lives, they have such huge caseloads… but after 3-4 months of waiting what they say and write afterwards means so very much. (Female, UK, 50s)

The view that autoimmunity is widely misunderstood leading to over and mis-diagnosis of non-organic syndromes

As I frequently drag my collection of body parts around multiple’ ologies’ I do wonder when it was that I stopped being…well..a systemically connected human body…I ‘m not denying that conversion or functional disorders exist…just that these labels are often too easily plucked out of nowhere…often through lack of rigour, willingness or the time to get to the root cause of what I believe are some of the trickier symptoms of autoimmune disease (in all their ugly guises). (Female, England, 60s)

I’m increasingly incensed and hope to lobby for the word functional to be challenged until all the established and newer methods of testing for organic conditions are available to all in UK. Particularly for those of us in the devolved nations who can’t even access London testing due to not having a right to an out of Scotland/Wales second opinion. (Female, Scotland, 50s)

Navigating health systems

Although some posts detail availability of quick support, there are more frequent posts concerning difficulties accessing medical support, ‘gatekeeper’ receptionists/GPs, irregular and postponed appointments and declined referrals. Patients and physicians are often perceived as being trapped in an inefficient, over-burdened system. There is a widespread sense of injustice that limited reserves of physical and mental energy are required not just to ‘fight’ the disease, but also to overcome barriers to obtaining medical support, both pre and post diagnosis.

Geographical inequalities in care are regularly discussed. In particular, members in parts of Wales discuss their perception of poor local rheumatology services. These members, and others, report great distress – and sometimes irreversible organ damage- with frequent descriptions of being refused access to SLE specialists due to ‘gate-keeper’ policies.

Suggestions that personal characteristics influence diagnosis are not uncommon. Some female members perceive physicians may be more inclined to give psychological misdiagnoses like ‘anxiety’ and ‘stress’ because of their gender and stage in life. As many become symptomatic in the childrearing years, the stress of ‘being a new mum’ or ‘having teenagers’ are sometimes given as reasons for their symptoms, whilst those in older females are often attributed to the menopause, age related decline and in one case, ‘empty nest syndrome’. Although males are much in the minority as SLE patients and on the forum, their conversations reveal that their diagnostic journey may be no easier.

A proportion of UK patients report that diagnostic/care difficulties or NHS waiting times led them to seek – a usually quick- diagnosis from SLE specialists privately, reinforcing diagnostic and treatment inequalities between socioeconomic groups.

Rheumatologists who are perceived as taking a holistic view of the patient and who coordinate team-based care are appreciated. Conversely, frustration is expressed when symptoms are not seen systemically or medical specialisms seem to treat the patient as simply a collection of unconnected body parts. Some members complain that no-one takes overall responsibility for them so that they feel they are being passed “like an unwanted parcel” around the “’ologies”, “with merry-go-rounds” of superficial investigations and erratic communication between specialists. Many say they suspect clinicians are unwilling to explore the complexities of their symptom picture where it crosses the boundaries of specialisms. Members report being left with nothing more than “re-assurance” despite on-going, debilitating symptoms. This occurs both pre and post-diagnosis and adds to the perception of self-reported symptoms not being believed and feelings of invalidation.

Table 4 – Navigating health systems

The impact of cancellations and difficulties accessing medical care

To them it’s a cancelled appointment, to me it’s my life. (Female, England, Teens)

I’ve no letter and no booking for my next appointment. There are no lupus nurse appointments and no one’s answering the telephone. I know things are terrible in hospital but it doesn’t alter how horrible it feels to be abandoned…the horrible irony of it all is if we got more preventative services before we got critical our care would be a lot cheaper and we’d be more likely to be working…I just feel too tired to keep on saying the same thing over and over. (Female, UK, 50s)

Views on inequalities of care

I also live in wales and can echo the woeful lack of awareness, facilities, therapies, access to care and support! (Female, Wales, 30s)

Apart from being female, it was pretty obvious that me being relatively poor, impaired by trauma, illness, brain fog and being unable to think quickly on my feet made it near impossible to get the time required for appropriate SLE care. (Female, Australia, 50s)

Experience of co-ordinated multidisciplinary care

Despite the negative bloods, I had a few years of remarkably enlightened consultants who kept each other in the loop and worked together on it. (F, UK, 40s)

Resilience and support

Close working relationships with physicians are reported by many members, with an overwhelming feeling of relief and gratitude to the clinician/s who diagnosed, ‘believed’ them and gave them compassionate care that they are frequently described as ‘stars’ ‘heroes’ etc with a feeling of great security and attachment.

Honest and empathetic communication from physicians is highly valued, with many posts highlighting the importance of listening with compassion to a patient’s subjective experiences. The importance of the role allied health professionals, such as nurses and physiotherapists, play is discussed, with a perception that they may have more time to focus on listening to the patient and helping with the practical challenges of the disease.

Some members report how diagnosis, medical support and acceptance gives them strength and allows them to validate their own symptoms by listening to their bodies and pacing activities. Many members also detail support from family members and friends, both practical and emotional. Although lives are clearly substantially altered by the disease, there are often inspiring posts by members who are finding a sense of purpose and achievement by adapting activities around the limitations of the disease.

The forum is discussed as being extremely positive, often providing the empathy and validation lacking in other areas of their lives. Members provide empathetic support, share symptoms and knowledge, with active moderators ensuring a safe respectful environment. The forum also facilitates friendships and can reduce the frequently reported isolation and loneliness from being less able to participate in a normal working, social and family life. Improved medical confidence and medical relationships regularly occur from self and peer-empowerment, often through knowledge acquisition, sharing research papers and tips on managing the disease and medical encounters.

Table 5 -Resilience and support

Supportive medical relationships

Mine (‘star GP’) once phoned me at 7pm on a Friday night to check I was OK! …he always books in me in for his last appointment as he doesn’t want me to feel rushed. (Female, Scotland, 40s)

My wonderful consultant watched as I cried in her office (on dx with SLE) I asked why she believed me when I’d been dismissed as an awkward patient ‘because when a patient tells me something I choose to believe them’ (Female, 30s. England)

I feel I have had the best of treatment and have been shown understanding, compassion and also been involved in the development of my treatment plan. (Female, UK, 70s)

Learning to adapt to the limitations of the disease, with compassionate guidance from clinicians

I went to get some physio and she was so positive ‘we will get you back into shape’ and she was a great listener.. I thought I really need encouragement right now and positive speak. (Female, Wales, 50s)

I was very tearful…she (lupus nurse) was very kind…held my hands and said all of this has unsettled your SjÖgrens, no wonder you feel so low. Walking out of there I already felt a little uplifted. Nurse did not mention antidepressants, give an eye roll, look at her watch…she gave compassion, understanding and reassurance. (Female, UK, 60s)

The value of peer support and understanding obtained from the forum

We all hit that wall of despair, but if we let each other know, as you all always do, that there are those who care, who can lift us for the moment so we can shake it off and keep going, I think it helps see us through…I can’t tell you how many times I’ve read posts and have cried, been so angered, or laughed, and felt inspired by all of you! (Female, 60s, US)

(will post draft discussion in another reply as this is long!)

And here is the draft discussion section for anyone that can't access the dropbox version. It is too long so any suggestions of parts that you don't mind being cut, or any suggested shortenings (some of you are probably better at writing more concisely than me!), or anything that's missing, please do suggest. Also anything of key importance for the conclusion from your point of view please? Thank you all, together we can hopefully create a real impact :) (The random numbers are references to other papers)

Discussion

A feeling of relief is usually described as the overwhelming emotion on diagnosis. Considering SLE and related systemic autoimmune diseases are often life-changing, sometimes life- threatening, incurable diseases with many unpleasant manifestations, this is a strong indication of the degree of trauma often suffered on the journey to diagnosis and the desperation for medical help and validation. This research has identified that many forum members have experienced a distressing combination of life-changing symptoms with often traumatic diagnostic journeys and a perception of invalidation in multiple areas of their lives. Whilst we cannot extrapolate these results to all SLE/systemic autoimmune patients, the overarching theme is chronic invalidation with patients who often feel poorly served – and in some cases, damaged - by health systems with fragmented care and a lack of knowledge about the disease amongst society and many physicians.

Initial symptoms are often reported on the forum as appearing sequentially and insidiously, with patient and physician encountering difficulty in identifying an underlying disease process frequently seeming to lead to frustration and misdiagnoses. Patients in the ‘not yet correctly diagnosed’ stage are clearly a highly vulnerable group at risk of potentially irreversible damage to their physical and mental health.

SLE is often reputed to be an ‘invisible’ disease with both social and medical diagnoses seemingly reliant upon visual indicators of disease, with an often-prolonged period of time before symptoms are validated by a diagnosis27. Validation is a key theme identified in both the existing literature and this research. Santiago et al found invalidation in all rheumatic diseases was associated with psychological factors, loneliness and greater pain, and requiring intervention28. Our research is in agreement with previous research that the lack of perceived consideration for subjective symptoms can leave many patients feeling disbelieved and dismissed11,16,29,30. Price and Walker found that for some the SLE diagnostic journey can reflect the nature of the disease in terms of uncertainty and ‘chaos’31. Studies of other rare diseases are in agreement with our findings, in that the search for diagnosis can be very distressing and finally obtaining a diagnosis can be extremely validating32.

In agreement with our previous research11,16, we found that mental health/psychosomatic misdiagnoses were perceived as particularly damaging, creating posts demonstrating insecurity and fear of physician disbelief even in subsequent positive medical relationships. Many forum participants reported that they eventually lost their self-belief and questioned their own sanity with examples given of how this led them to avoid medical help. This was also found in a study of parents of children with autoinflammatory disease where they reported becoming increasingly fearful, confused, lost self-confidence and began doubting their own judgement in the face of medical disbelief. As in our study, this generated a persisting distrust of the medical establishment even after diagnosis33. Those members who reported compassionate medical care throughout the diagnostic uncertainty period often reported great trust in that physician.

Many patients report that referrals and diagnosis were delayed by common medical misconceptions. These included that lupus can only be diagnosed in females with positive anti dsDNA, ANA, malar rash and kidney damage. This is consistent with previous research finding longer delays to diagnosis reported in children, males and late-onset cases34, and in ANA negative patients11. Although SLE is more prevalent in females of child-bearing years with a female: male ratio of 9:1 the disease affects both genders, all ages and there are multiple other presentations, symptoms and immunological criteria for diagnosis1,35,36.

The complexity and varied presentations of SLE and other related autoimmune diseases causes difficulty with the desire for clarity and certainty 37,38 .Uncertainty and the strongly expressed desire for a clear diagnosis may be better managed by improved physician communication as to the unpredictability and evolving nature of these diseases. Lack of definitive diagnosis or delay in provision of treatment for debilitating symptoms is distressing for patients yet may have a well-considered medical reason, for example, the necessity to consider other potential causes and the balancing of risks vs benefits of medication. This forum analysis has demonstrated the great appreciation for those physicians who clearly and compassionately communicate the rationale behind these decisions and provide support with symptoms, regardless of presumed cause. Improved communication and support for any co-diagnoses seems to also assist in acceptance and trust in cases where a co-diagnosis is accurate and helpful in terms of differentiating from active SLE for disease and symptom management. Whilst acknowledging the very real and distressing nature of conditions with no current definitive testing, such as ME/CFS and fibromyalgia, many forum participants remain extremely sceptical as to the validity and acceptability of these as co-diagnoses in the context of autoimmune diseases, when pain, fatigue and sensory disturbance are also a regular manifestation of the primary disease.

There is a strong perception of geographical, socioeconomic, gender, age and disease inequalities of diagnosis and care. Following the BSR guidelines1 could reduce multiple inequalities by improving knowledge and consistency in referrals, diagnosis and management. The perceived lower level of medical and social support compared to other diseases needs consideration. Although the changes to the British welfare system have adversely impacted many chronically diseased patients, the invisibility and relapsing-remitting nature of the disease, the lack of diagnostic certainty and lack of understanding regarding SLE by both physicians and welfare assessors, potentially causes greater problems for these patients accessing appropriate financial support. The need for patients to be persistent in negotiating the institutional complexities and power inbalances between patients and NHS/ government systems is apparent on forum posts and possibly particularly pronounced in such complex conditions. These differentials of power are reported in previous studies39,40, with difficulties accessing welfare during diagnostic journeys, potentially due to distrust in the welfare system of those lacking a definite diagnosis39, and Whitehead and Williams hypothesising that female lupus patients struggle to be taken seriously by physicians, being ‘doubly burdened’ by gender and diagnostic uncertainty40.

In addition to difficulties obtaining diagnosis and care, forum members also discussed the many negative consequences of the disease on their quality of life, with severe fatigue, pain and cognitive difficulties most regularly mentioned, often causing difficulties with employment and relationships. As with other studies of chronic illness, we found self-worth and self-identity are frequently damaged due to an inability to fulfil social41 and caring roles. This was especially apparent amongst forum members with young children, where guilt and sadness were commonly expressed.

This study has identified that the support provided by the forum, LUPUS UK and by empathetic physicians, family and friends helps mitigate invalidation and uncertainty. Clinicians providing emotional support and listening to patient’s symptoms non-judgementally and providing support in improving – often poor- QOL is very valued by forum members. This could potentially be improved with more focus on QoL and more access to psychosocial support.

Emotional support and the sharing of experiences is an important function of all patient groups, whether face-face or online and is highly valued by this group of patients. In agreement with other studies, we found that peer support can help people through interactions with others in similar situations, often by promoting self-esteem, improving self-worth42, and reducing isolation27. Our findings were in line with Basu and Dutta’s study44 that online communities can increase medical knowledge and health literacy from other patients through discussions.

Many of the LUPUS UK forum members demonstrated a high level of medical knowledge and shared up-to-date research, with multiple posts detailing how knowledge and empowerment gained through the forum assisted in diagnosis and improved care. However, the large quantity of posts requesting information on deciphering blood test results, medication enquiries, symptoms and misunderstandings of the disease, particularly amongst new members, may point to the need for more information and clearer explanations from HCPs, especially at diagnosis.

In conclusion, these patients would greatly benefit from: clinicians taking more steps to validate and empathise with their symptoms and experiences; all physicians receiving more education on the identification and management of these diseases; greater societal and medical awareness and support provided with the much reduced quality of life. Improved support for all patients with initially medically unexplainable symptoms is an urgent requirement.

misty14
misty14 in reply to MelanieSloan

Thank you melanie for posting your incredible findings from this research, you have collated so much good info. I really love what you've said and feel that this could really make a difference to us all in the clinical setting. OMG change really does need to happen with Consultants attitudes. Its humbling and upsetting to read some of the case studies of what people have gone thru thanks to the prejudices of the medical profession.

Even more grateful you've given us this chance to participate in research to start the change process.

Having read this I definitely feel the title should be eye-catching so I too prefer the one' but you don't look sick'. It might shame them into change!.

Keep well and safe. Xx

MelanieSloan
MelanieSloan in reply to misty14

It's definitely been a real team effort, so thank you too Misty and everyone here for their input. If anyone has anything else to add, or any suggestions for improving the draft paper, please do let me know. Thank you also to those of you that have emailed me suggestions. This paper is from all of us, so I will definitely take them on board and add in wherever possible. Thank you all :)

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