This might seem like a strange post but I am wondering if anyone has had or is having treatment envy?.
Have you got a close family member and friend with similar symptoms to yourself but they can have a treatment or operation that you can't which could greatly enhance their lives!.
I'm going through this at the moment and whilst I feel really pleased for them because I'm struggling with my own symptoms and illness , have found I can have strong envy feelings which I'm surprised at and not proud of!.
Can anyone else relate?. I would be so interested in your experiences and how you overcame it as its an aspect I'd never thought of before!.
Hope your all as well as possible. Thanks for reading.
Love mistyX
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misty14
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Thank you for your great reply and for showing me I'm normal!. I can see how it's easy to be envious on here of people with good Rheumy's Never thought of it!. . Mine is twofold, it's what you describe as I have a friend with RA and we have the same Rheumy and she's about to get a new drug to help her as it's much easier to see she's flaring than these illnesses !.
Second one is my mum who I live with who is about to have a hip replacement and hopefully lose the awful pain she's in!. I feel dreadful to feel like this but I'm in similar pain if not worse ( pity we can't measure it) and have till Tuesday to wait for pain chat with Consuktant and then another 6-8 week wait for more injections if she sgrees!. Been waiting a long time to talk to her. I've had this added pain seven years and would give anything to be rid of it for good!. It's also hard to have to be patient and supportive when suffering yourself with more to follow when she' recovering. Another issue for us is guilt at not being able to be as supportive as we'd like because of our health isn't it?. I've already said to her I can't come and visit her in hospital each day because I can't do the walking and she understands but I feel really dreadful about it!.
I guess Clareb the only thing we can do is stop comparing ourselves as it does lead to disappointment!. I'm sorry about your Rheumy. He is important to be right!. Could you change?. Have you been to nurses yet?. Hope it goes well if you haven't!.
How's your lovely dog?. Hope he's feeling better and can enjoy a little walk. Take careX
I think chronic pain bribgs anyone to despair and many other strong emotions. I hadn’t realised that you’re in such severe pain. Pain can’t be measured because it’s subjective - I had all 3 of my children without pain relief and barely flinched whilst the other ladies could be heard screaming down the corridor.
I can be very uncharitable about another lupus lady I know locally who goes to Bath and has OT support, regular appointments, appropriate referrals etc. Doubtless she is sicker than me but I think it’s as much to do with the lupus centre that she attends as anything else.
I am due at the lung centre on Monday and the rheumy nurse the following week. I need to talk about my intermittent hearing loss, tinnitus & vertigo which I think might be AI. I’m having some hearing tests done before I get there so that I have an idea of how hard to push. Sjogrens dryness seems to be worsening but joint swelling seems less energetic!!
The dog is on the strictest if bed rest in an attempt to control the deteriorating movement. He is stable so long as he doesn’t do more than potter around the house. If he can stay stable for long enough then hopefully we can look to the future xxxxx
I totally agree with all you say Clare. We've all got our different thresholds for pain, does make it hard as it's so subjective . You were clever with childbirth as they say there's nothing like it for pain so if you cope with that you can cope with anything!. My pain Consuktant thinks I'm a stoic !. We can't judge who is the sicker like the lady you know who goes to Bath and my RA friend!. It just can be hard if we're seeing what they get from appt's that we don't!. RA is much easier to treat as they can just look at the bloods and know when to act because the inflammation markers change and they want to prevent damage!. I'm envious of that as it's much more straightforward whereas for us it isn't like that as no damage being done which is good but My Rheumy is so reluctant to act !. It's still makes you feel poorly like RA and impacts on day to day life which he doesn't take on board enough with me!.
I'm sorry you are coping with difficult symptoms too. Hearing loss is a huge worry so good luck for Monday. Good thing you've got the hearing results to present at appt. Good luck too for the Rheumy nurse the following week. Hope it's helpful. Keep us posted. Glad your making progress with your dog, he's young though to be so confined!. Bet he finds that hard and then you too seeing his face. Fingers tightly crossed for you. X
Great post & discussion...and Me Too: 👍👍👍👍especially during my 40 years in the diagnostic wilderness watching my family in The States and my inlaws here in the UK all getting loads of important medical investigations & treatment while medics were continually telling me all my emergencies & various so-called diagnosed stuff were “normal” (eg GPs insisting for 14 years a swelling that grew like topsy was OA when actually it was a chondrosarcoma...clinically diagnosed hiatus hernia which years later gastroscopy & biopsy proved to be barretts oesophagus,...and i could go on...)
Even though i’ve finally had 7 years since my infant onset lupus diagnosis was recovered and daily lupus meds have started helping me loads alongside great care from most all of my regular multisystem hospital clinics... i may mostly feel less “treatment envy “ but i still can’t even begin to feel secure or safe...the medical PTSD caused by those miserable 40 years continues to haunt me so badly that i am constantly expecting the nhs to wash its hands of me...irrational, but inevitable after decades of negligence...basically, i figure i’m more or less like a damaged rescue pet: anxiety will never leave me....i just have to manage it as best i can....years of therapy have helped...but what REALLY HELPS is your good company + that of everyone here on our wonderful forum...we all have so much in common
Thank you for your lovely reply Barnclown. I just don't know how you coped being so I'll all those years before your recovered diagnosis!. Seeing family members getting the best medical help and you weren't and having to cope as best you could , I just don't know how you did it. Sheer guts and determination and thank goodness your getting the help you need now!. Better late than never I guess but sadly you can't get those years of your life back again!.
It's wonderful to share, to find others who have experienced same emotions, makes us much more normal!. I did wonder about writing this post and wrote it out first many times to perfect it as not an easy thing to say.
Do hope Monday goes really well for you. Much deserved for all your hard work. Fingers tightly crossed and have a good weekend. X
😍 Thanks so much for everything you give us all: to me, you are one of our brightest 🌟s
I very nearly didn’t survive those 40 years. They were extremely hard. Eg I nearly died at least twice due to sepsis...and suffered 14 years of misdiagnosed malignant cancer of the connective tissue. The progression of my multisystem debilitation was relentless. My depression was desperate much of the time. Lucky for me, i have a wonderful therapist + a hero husband + i had a very very kind boss....looking back at those terrible years, i shudder
Also, i must thank you for introducing me to the term FOMO 😆: i had to google it!
Good luck to you for your important appt on tuesday 😘🍀😘🍀😘🍀
Thank you very much Barnclown , fulsome praise coming from an amazing lady!. It's just incredible what you came thru!. I don't think there will be anyone else with an experience quite like yours!. I'm glad I've brought you up to date with FOMO!. All the very best. X
Totally and utterly relate apart from to the awful pain you describe - which I couldn’t envy for love nor money.
Okay well an old friend has just died of cancer at age 55 and another is struggling terribly with chemo and immune boosters for same so I’m really not pandering to my previous baser moments with the support cancer sufferers are given compared to autoimmuners. No way can I envy my friends on any level.
But here’s my current source of self disgust. I admit I feel nasty jealousy at my sisters for their deafness - or what it brings with it in the form of maximum PIP and a system that caters for their very clear and indisputable disability at least. And for never knowing anything other than having this disability. I even had a sister conflict over the PIP thing on my very lowest day ever about ten days ago- and I ended up grovelling when my sister expressed her hurt, via her deaf husband, who regularly drives me nuts with his patronising manner.
But this was the lowest I can recall going since we were kids (less than a year younger than me) so I was suitably abject and she forgave me and of course she then had the moral high ground too. I bit my tongue. But inside I admit I have continued to seethe away. Not proud of this at all.
The other thing about this sister is that she is such a sweetheart - but so accident prone and used to being the centre of attention over health related stuff. My entire life has been spent playing second fiddle to her as she lands herself with yet another fracture or appendicitis or eats a poison berry or bites into a glass. And I am the muffins big sis who has to help her from a distance in whatever way I can - checking her reports (she’s a teacher) for grammatical errors and being solicitous over her physio exercises, speaking to her GP over the phone about her blood test results etc. I am still waiting to see a physio 2 years since requesting a referral. She has had more physio then I’ve had hot dinners!
Deafness has been the reason my historic autoimmunity was completely overlooked by my neglectful parents so this residual bitterness and chip on shoulder is my own guilty secret, Misty! And I’ve been feeling so bad about myself all week because of this little bag of bile and sibling rivalry which all goes back to my dead parents attention being inevitably focussed on my younger sisters while my hair fell out and my butterfly rashes were ignored and the conjunctivitis, rhinitis, allergies, eczema, measles, whooping cough and ENT infections and my many, many trips to the dentist were all shrugged as anxiety or just my bad luck.
But conceding the way we feel is half the battle won I think so huge thanks for giving me the chance to let off steam - hopefully without being judged too horribly! X
Thank you so much for your wonderful reply. The power of sharing because it's so important for our mental health to let these things out. I'm very glad you've benefitted from doing so as I've been in two minds whether to post about this or not because of wondering how others would view me. Exactly as you say, I don't feel proud of feeling like this either so I'm really pleased to read I'm not alone so your helping me!. It's very special of the forum that we felt we could say this in public in relative safety as our loved ones won't know what we've written I don't think my parents would understand about this and how about your sister?. It's an aspect I'd not really thought about until now!.
You are very close in age which makes it hard and why do you have to chase up her medical things, you have enough of your own?. With so many adaptations there are for deafness for phones etc , surely she can be independent as possible!? Is it because of her health problems?.?I do understand how you feel and why , must have been so hard being ill yourself , needing help and being ignored, specially by your parents!. . Enough to make anybody resentful as she had the attention and help etc!.Despite your feelings it sounds like you have a good relationship with her which I think is huge credit to you! BUT is that because you are doing all the work?. I don't wonder you've been worried about your ears in view of hereditary too!.
I think your physio appt needs chasing as its two years!. Referral not done I bet as that is not on!.
Im thinking that from the great replies I'm getting that the only way to overcome or minimise these envy feelings is to try to do something for ourselves that will help our health situation . Can't change what's happening around us. I'm hoping that will happen on Tuesday when I speak to pain doctor!. When do you speak to your Rheumy?. Hope we bring each other luck!.
Thank you twitchy for making me feel much more normal!. Hope ypur having as good a weekend as you can. X
Aww I swear I actually love you and other friends here Misty - although most of us haven’t actually met and don’t even know each other’s real life names. Somehow it’s a very important parallel universe isn’t it?
It’s difficult for me as the oldest and hearing one of 3 sisters - both younger ones being profoundly deaf from birth. My two sisters were both born with complete hearing loss but apart from that they are like chalk and cheese! Both our parents dropped dead suddenly both at 73 and we are all very close.
The youngest of the two is 6 years younger than me and was in a terrible and abusive marriage and is a single parent of 2 teenagers now. She is very like my late mum and, with her awful marriage long over, strides through life sticking up fiercely and fearlessly for herself as a profoundly deaf woman - works full time as a social worker for deaf children. She’s amazing but can be fairly impossible too - her sensitivity to others isn’t always very keen! She doesn’t worry about the future, about future health problems and she finds it very hard to be empathetic with mine. She has knee arthritis and I strongly suspect she has EDS. She is indignant, demanding, independent and proud by nature - very like my late mum really! But when bad things happen she can’t cope at all and relies on her family and becomes hysterical and entirely egocentric.
My other sister, who is so close in age to me that we are like twins, has acquired a sort of learnt helplessness - although she is actually very clever and incredibly capable and a full time, award winning teacher of deaf children.
Somehow she appears more disabled and vulnerable than our younger sister although she’s actually marginally less deaf - but wasn’t discovered to be deaf until she was two. Her young adult children are both hearing and fiercely protective over their mum. Whereas my three young men just laugh a lot at me!! Hope this explains our sister dynamics. I feel I have quite a lot of responsibility as the oldest and guilt about being the one who can hear.
Thank you for your wonderful reply. Wouldn't it be great if we could all have a big get together to meet up?. But then maybe it could spoil illusions and ruin what we have. I chuckle to myself that literally now I'm two people thanks to forum but should have been anyway as I'm Gemini. Never been a true one though!.
I find it fascinating that your two younger sisters have same job and deafness problems and yet be such different characters but I admire their achievements so much. . Thanks so much for explaining and I can really see where you guilt comes in re being the hearing one although you paid such a price with your health in a different way. It's interesting too that you have the same age gap between yours that my mum has between her sister and their relationship has never been easy!. Six years is significant!.
Good luck for Rheumy phone call this week, hope you get it sorted. I do understand your worry re family medical history but a chest X-ray will rule out a lot of possible causes of those worrying symptoms!. If they worsen you need A&E!. Take careX
I'm very touched that my post is making such a difference!. I've been in two minds whether I should do it as its a very tricky subject but I'm so glad I have!. Hope your health has improved specially the Gastro side?. I too go into my shell when things are tough so hope you will come out more from it soonX
Thank you misty. The gastro side is a little better ( for no apparent reason). I'm getting my head around a diagnosis of my primary condition as systemic sclerosis and freezing through the Raynaud's 😱❄️
Thanks for replying, glad the Gastro side is better, maybe having a diagnosis has alleviated some stress?. Must be a shock as different auto- immune illness!!. The Raynauds and scleroderma association website is a good one for helpful info!. There are a lot of treatments for Raynauds that could help. Roll on Spring!. You take care and lots of TLC to help you process this!. X
My mom has RA and I do sometimes get down on myself because there are so many more options for her and many seem to work better and faster than anything for me. I wouldn’t call it envy, but it definitely makes me feel “left out in the cold”.
Thank you for your great reply. That must be really hard for you. I do agree about RA , it's a much easier illness to treat and it's had a lot more research into it that's come up with better treatments compared to our illnesses!. Hope your as well as possible at the moment!!. X
Hi misty, sorry for late reply (been in hospital 🙁) but wanted to say that I’m sure we’ve all felt like this at times, just not always been brave enough to raise it (even to ourselves sometimes probably). My worst was feeling ‘jealous’ of an acquaintance with breast cancer because she had great care, understanding from everyone and been completely cured. Obviously I felt very sorry for her too and really supported her but it was the opposite to what many of us get.
I think it’s the inequality that is the worst. Like you say those with RA can often access treatments we can’t (maybe because their disease is more visible?) but even amongst those of us with lupus/CTD there is such a disparity between how well we are looked after, treatments offered and even what diagnosis we get (from the same tests and symptoms!).
I’ve got an amazing rheumy and sometimes want to share how great he is to give others hope of finding a good one but am also aware that it’s just not fair on those who don’t have one like him 🙁 (but then I’ve also had my share of bad experiences from dodgy neurologists 🙄). It’s so important to get one you trust and who cares.
I hope you get the right treatment and relief from the pain.
Thank you for your lovely reply. So sorry you've been in hospital, do hope your feeling better and your recovery goes well. Nice to be home and quieter, can be so noisy in hospital too!.
I so agree with you re cancer treatment and funnily enough I've just been discussing this aspect with twitchy !. A few months ago it came up on forum about the support of cancer patients compared to us. . I too feel awful for saying it but I do feel there's a need for us sufferers to have extra support specially if our illnesses have gone on for long time and giving us tough symptoms to deal with,it can really get us down.!. There's an appeal at my local hospital for a wellbeing centre next to the chemo unit( all paid for by public donations) and I think I'm going to write and ask if sufferers of these illnesses and others could also access the services !. There's going to be lots of help on offer.
I really agree with you too about not necessarily being brave to sdmit to green eye to ourselves never mind a public forum!. For days I pondered whether to voice it and how best to do it because I didn't want to really reveal this about myself!. It's an aspect I'd never thought about but I'm so glad I did post because it's so helpful to know I'm not alone with these feelings and I've had a good response !.
So pleased you have a good Rheumy, makes up for a horrid neurologist and is so vital for our care. Hope you don't have to keep seeing the neuro .
Our CTD's are unique in the way that they affect us so differently despite same/similar symptoms!. Makes treatment doubly hard unlike RA which is much more straightforward!.
I guess the only way to cope with the green eyed mondter(I call it that now) is to try to do everything we can to improve our own situation. I'm hoping to do that tomorrow when I speak to my pain consultant, do need added help!.
This is such a good post Helen, I can totally relate to this, until I joined this group I felt very alone with this illness. I know family and friends try and understand but they can’t really and I find myself stuck at home being unsociable because who wants to be out when they feel so poorly unless they really have to be so I guess nobody really sees me when I’m struggling but then a couple of years ago a very good friend of mine became poorly with Hashimotos and suddenly I had someone who had many of my symptoms, awful fatigue, joint pains etc etc, I know it sounds awful but in some ways I was pleased as she could now understand and I felt we were going through a tough time together, she was put on treatment which made her worse but then did a lot of research and with her GP’s support she started NDT and her life changed, the fatigue went, the joint pains went, and she has pretty much got her life back, she still works, has holidays etc and is able to cope with her busy life and don’t get me wrong I’m really happy for her as she deserves it as she is such a lovely kind caring person. I don’t want her to be poorly and she has a lot of empathy for me now but I still feel envious because none of my treatments have made much difference so far and I’m still struggling, I want my life back so I can enjoy doing things with her too.
Yes and then there’s the guilt for feeling envious of others and the guilt for not being able to do all the things you think you should be doing for others or you’d like to do for others! My mum was in a nursing home for over 3 years before she passed away, we would talk on the phone a lot and I would go in as much as I could, even when I didn’t have the energy I’d push myself, but on occasion I just couldn’t get there, it would be a 2 or 3 weeks before I’d get back in and I’d feel so guilty for not getting there. I feel guilty when anyone asks something of me that I have to say no to! I’m learning to tell myself that it’s ok to say no and not feel bad about it and not to dwell on it, it’s hard, so I can relate to how you’re feeling about your mum when she goes into hospital, my mum was very understanding too but I still felt the guilt. It’ll be a busy time for you so you’ll have to rest where you can between visits, will she be in hospital for long?
That’ll be interesting to know if you would be able to access services from the proposed well being centre, I think chronic illnesses are at the bottom of the list when it comes to people’s perceptions of illness, cancer being at the top, us somewhere near the bottom!😩
Thank you for your wonderful reply which I can relate to so much. Hope it's been helpful writing it all out!.
I do so agree re immune illnesses being at the bottom and cancer at the top!. There has been so much research into cancer compared to these other illnesses!. Makes life tough for us!.
Don't you also think that ladies go thru life feeling permanently guilty?. There's always something to make us feel this way if we've fallen short of expectations!. Thanks too for your very helpful advice when mum is in hospital!. Sorry you had it so tough with your parents being very poorly together!.
Do hope you feel better soon. Roll on Spring!. X💐💚😊
I think you’re right there about going through life feeling guilty and you’ve hit the nail on the head with.... ‘There's always something to make us feel this way if we've fallen short of expectations!’ ....well put Helen👍🏼
Thank you for posting this question, I hope the answers have helped you too, I know they’ve helped me, and I think sharing something that you feel and think but haven’t told anyone else really does help.
Yes roll on spring and the beautiful blossom 🌸🌺💕😘xx
Thank you Diane for your lovely reply. I'm glad this post has helped you as it's definitely helped me hugely !. Do agree about sharing something we've not been able to being very beneficial!. I don't feel ashamed of having these feelings anymore and feel much more normal!. Thank you for being part of this process and helping so much. Do hope your feeling better health wise. X😊💚💐
Hi again Misty. I’ve been thinking a lot about this post - as viewed from perspective of one newly off MMF, my fifth DMARD, with my PIP tribunal this time next week and this virus now dragging me through week 6 or 7 with that sinus-y taste and feel plus all the rest.
One of the BSSA helpline women - both excellent people to let off steam or be a bit abject to - once said to me, “this disease may not kill us but it doesn’t half take the joy out of living”.
So I guess how I’m feeling just now is very FOMO for those who just get a virus that drags on but know that there’s an end in sight. They will return to a state of things where their taste buds will come back, their nose will be moist and normal again, their skin will recover its normal hues, they will be able to swallow and not taste or feel thick wedges of sweet or salty tasting phlegm or spit, they won’t need to prepare a bag with inhaler, eye drops, salivex, spare pants and pad, white noise aids every day for the rest of their lives. They won’t be so tired that they feel the need to lie down whereaver they happen to be. They won’t receive invitations to old friend’s funerals or parties or lectures or exhibition previews with the dread of having to decline. Not to mention walking aids, splints, diets, medications etc etc ....
And yes this even includes those having cancer treatments who were previously fine with no chronic illness. They will at least have Maggie’s centres and Macmillan nurses and others including GPs, family and friends who can tell them that chemo causes a horribly dry mouth and hair loss - but once it’s over there is a good chance they will taste and smell and their hair will grow back, they will probably be able to swallow and speak again without this awful, relentless glue and sandpaper existence, cough, breathlessness, eyes dryer than dry plus all the rest.
It’s the compassion and sympathy of the medical profession, of friends and family and colleagues I envy - and putting it out here is the only way we with chronic illness all have of miminimising the bitterness to prevent it from becoming pure bile!
Thank you for such a beautifully written reply!. It's very moving and I'm just sorry how much you are suffering so, either with or without treatment!. It's impossible to know what's doing what which is why you've come off MMF very bravely!. I hope it provides some much needed answers and you can manage ok without it!. I can't begin to imagine what it's like with those awful symptoms!. There should be better treatments. ! Thank you too for the interesting link and I agree wholeheartedly that there needs to be better education of doctors and patients about what Sjogren's truly is!. The trouble is people just think of it as dry mouth and eyes and nothing else!. Don't realise it can be such a serious systemic illness!. I also agree with the BSSA helpline lady that these illnesses rob us of so much in life!. Mine certainly has and because we don't die early from it it's like a form of torture giving us years of problems with no respite ,if we're unlucky enough not to be able to lead a normal life with treatments as a lot of us are!. Basically , also we're saying why do we have to have a life threatening illness to have support that a lot of cancer patients have?. We'd benefit from maggie's place etc as so easy to feel dragged down by it all.I n some instances when these CTD's are bad and not responding to treatment then they can be life threatening too!. Luckily this is a rare occurrence but does happen!.
I'm glad this post has been so helpful and thought provoking!. I have been pleased and surprised at response but it's an aspect I hadn't thought of till now!. My Rheumy friend is being offered Retuximab and so I'm hearing all about it!. Another aspect that has just occurred is Rheumy Envy on here!. Easy to have if we see different peoples's Rhrumy's do more than our own do!.
GOOD LUCK for pip tribunal. Do hope common sense prevails there and you win!. No justice if you dont!. Keeping fingers tightly crossed for you for health and tribunal. X💐
Big hug Misty. And no one’s allowed to have PIP envy if I walk it with my walking aid ha ha!
Yep the thing is about the “just dry eyes and mouth” mistake is that people don’t realise that we are dealing with a card house here. Like minor subsidence it leads to bigger subsidence (sorry I’m a little bit anal about this house metaphor since our flood drama a few weeks ago!).
So no tears or saliva tells our parasympathetic nervous systems something is wrong and it sets in heightened state of alert leading to a multitude of small and large responses - like a cavalry around the body which overreacts to perceived impending attack. So for us it is always systemic and unlike Lupus or RA - the hyperviscocity (high ESR/PV) is completely untreatable so we are abandoned to our fatigue, neuropathy and Sicca and only really get small help from topical meds and Hydroxy - and often end up with rotten eyes and teeth and gums, which in turn triggers more of the systemic nonsense.
This applies to all with SS not just those with it in primary form.
So for FOMO purposes it wouldn’t be unreasonable for those of us with Sjögren’s to envy everyone who doesn’t have it - including those with Lupus and RA and MS - who all have diseases that are better recognised and have systemic treatments .. in theory that is! 😈 😉😏Xx
I love your reply, no- one in their right mind could have pip envy about going thru s tribunal!. Ha ha but they might have walking aid envy if yours is a jazzy colour and you have to wave it around a lot!.
Do hope you've got your flood damaged home sorted better now!. It's been one thing after another for you!. It's interesting to me how you describe the parasympathetic nervous system and its impact on these illnesses because my GP has just told me my fast heart rate is my body releasing adrenaline amid the flight and fight response causing palpitations too!. How are bodies can get so mixed up causing painful, difficult symptoms. I do so agree that you Sjogren's sufferers could easily be envious of X Lupus/RA scleroderma sufferers because of having better recognition and treatment. To be condemned with those miserable symptoms is nothing to be envious of!. I think I've also mentioned this to you before about the wasted publicity opportunity Venus Williams has managed!. She could really have raised the profile of the illness with what she's achieved but instead chooses to remain silent about the illness!. That does make me mad!. I'm so glad this post has been helpful and thought provoking. It's certainly helped me. Work your magic twitchy next week and I look forward to your update. X💐🌟😊💚
Thanks Misty. Re Venus - it makes me think she hasn’t yet got much Sjögren’s - or if she really has it then it certainly hasn’t yet shown it’s true colours at all. She barely drinks, sweats plenty and never goes for eye drops during breaks - how can she be a Sjögi??????! I know some present later with dry eyes and mouth but it’s usually the first strong clue - especially in younger sufferers.
Some very clever people I come across say it’s just a lie or misdiagnosis that she has Sjögren’s because she doesn’t want a functional illness or she won’t be able to access cortosteroids. Just voicing the dissenting views here because we can’t actually know what goes on or what type she has (very mild!!?) but by heck you’re right she does a huge disservice to the vast majority of Sjögren’s sufferers the world over by not speaking about the disease and it’s (minimal?) impact on her. Xx
PS I don’t have FOMO about Scleroderma - it’s too rare plus it’s the one I fear having most on top of Sjögren’s because of my nucleolar ANA and increasing concern over symptoms of pulmonary arterial hypertension!!
I completely agree with you re Venus not having Sjogren's badly enough!. She wouldn't be able to compete like she does !.It does make you wonder if it is a lie and she doesn't have it. In an interview she did just before Wimbledon last year she flatly refused to talk about her health and didn't mention Sjogren's at all!. When is your tribunal?. Thinking of you lots and fingers tightly crossed. X
Misty, I have MS, Lupus, and RA. My sister is dying of cirrhosis because she drank every day for 45 years and destroyed her liver. I spent my life in the military and she spent hers in the bar. She truly has treatment envy and seems to enjoy telling me how unfair it is that I have insurance and doctors available to me and she doesn't. It's hard to have to watch her die because no one will help her. She has no money, no home of her own, no car, she has absolutely nothing. I wish I could help more. Have a good day and a better tomorrow.
What an apalling situation msmgelfing that your sister is dying!. I am so sorry and also that she is envious of you with such hard health conditions that your having to cope with!. I'm sorry it's very stressful for you . Thank you for replying. X
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