Well, following an appointment with an allergy consultant last week, I posted here because I was told my allergy symptoms are psychological.
I needed support re-affirmation of what I know and experience are autoimmune symptoms. I also need, and got, good friends who understand.
Well today, I have telephoned the PIALS (patient information and liaison service) at the hospital.
I explained that I have an invisible illness Sjogrens syndrome, query lupus and hypothyroidism. Also, that the consultant in clinic, left me feeling sorely disappointed, when he told me that my symptoms are psychological despite me attempting to discuss sjogrens.
I also told her his non empathetic, non compassionate, closed minded approach did not match the hospital values, let alone the moral and ethical duty, we would expect from a consultant.
I told her that I had copies of factual evidence of sjogrens related symptoms, that I would have willingly shared with him. But he was very dismissive.
I asked, I wonder what evidence was he basing his opinion of a psychological diagnosis on?
I then requested a letter be forwarded to me regarding the consultation telling her I intend to discuss it next time I have a need to visit my GP.
I am very happy to say, the PIALS person listened politely and empathised with my experience in clinic. Then concluded that she would speak with the consultant and ask him to forward letter including evidence of his diagnosis/opinion.
Whatever the contents of the letter, I feel that at least I have not allowed yet another medic professional diagnosis/opinion make me sick!
A year ago, my confidence was at an all time low as I was so unwell.
Connective tissue disease, as I learn can overlap thus, I now suffer 2 maybe 3 autoimmune disease.
Through support and knowledge I am managing so much better.
I did not deserve or warrant a consultation that undermined how far I have come, how hard I have worked.
None of us deserve to be humiliated. Together, we will name and shame such offenders.
Thank you everyone, you inspired me to do the right thing.
Written by
webar4780
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OH YES....loads of us suffer this sort of neglect & abuse long term....I had 50+ years of it, starting with my mother & father + physicians not informing me I was being treated for infant onset lupus....then once I moved to the uk @ 21 (leaving that diagnosis & treatment + all my records behind) the NHS spent 30+ years patronisingly telling me all my multisystem illness & emergencies were "normal" (well, mainly...they tested me for MS (neg) and then did their best to blame everything on my spondylosis 😏 ) ....until finally in my 50s the general debilitation was so advanced & widespread + so many clearly secondary conditions had been diagnosed & put into treatment that finally a brill rheumatologist figured me out...and then my mother said: but, dear, you've always had lupus! Go figure 😉
Of course, I've had time to process this (6 years to date)...but I definitely live with PTSD due to the strain of those 50+ years of diagnostic ambiguity (aka neglect & abuse). This wonderful forum helps me GRRREATLY to cope with this PTSD...I know I'll be managing it for the rest of my days. Thank goodness for my brill rheumatologist, Lupus UK & you guys 🌟🌟🌟🌟🌟🌟
I think you are valiant: well done webar! I ❤ how you put this stuff into words
It is very reassuring that others have walked where I now tread. I have learned a lot from you all so
I am very fortunate that I have quickly learned to redress the balance when dealing with ignorant and or patronising medics!
I am so sorry for your journey of illness and the diagnosis being withheld from you. Keeping that information from you hindered you getting a diagnosis yourself and proper treatment for some time I'm sure.
And, yes, thanks be to those who share and care and especially, to those medics that seek real understanding of the bigger picture.
We'll done you for not taking any of this poop. Your strength gives me strength and the friendship and understanding I've found on here is so precious to me. When you're dismissed because it's 'all in your head' makes me furious.
All doctors take the hypocratic oath which states first do no harm. Sadly, in my experience, some really haven't got a flipping clue what that actually means. An 'off the cuff' remark or, in your case, told blatantly that it's psychological can do so much harm. I started to think I was going mad and imagining my symptoms but my last GP visit I took my partner who went mad. My GP didn't even examine me and was told to go away and think about it for a few months and if I wasn't any better by then, to then go back to see him. I am waiting on my last blood results - I have a phone appointment tomorrow to discuss these but once I have the info I'm changing practices.
Nobody should be made to feel humiliated, or be brushed off, spoken down to but for some reason we tend to take it from doctors. Well no more - keep strong my lovely, I'm right beside you!
Keep us posted on how you get on - I agree we should complain about bad doctors but through the proper channels. That's on my list to do but will probably best do that when I'm not in a 'fairy fog'...
Knowing so many of us suffer such patronising abuse during appointments, gives me enormous strength! I feel that I am standing up for myself, and every other patient.
If my actions just mean that one medic will think before they make hurtful remarks, it will be well worth it.
Why should such medics keep getting away with it? Time to name and shame. Root them out. The NHS is better without them.
I really hope that friends on this site will also challenge unwanted and often unwarranted comments when they attend appointments.
Great to hear you are preparing to change doctor. You may decide to think about speaking to PALs first and see if you can sort the problems? You instinct will let you know what is best for your situation. Good luck.
And, remember the saying, ' when we keep doing what we do, we will keep getting what we get'.
If we are not satisfied, it may be time to change what we do!
Most GPs are extremely ignorant about Sjögren's - many I've come across can't pronounce it and go noticeably clipped if I ask about related symptoms. Even the best GPs I've had tend to confuse it with sicca syndrome and not grasp that it's a multisystem disease similar to Lupus, and can mimic RA extremely well. They say things like "perhaps this relates to an undifferentiated connective tissue disease?" And then I say "well I have a histologically confirmed, differentiated one already" and they look at me askance! Hang in there and stand firm - and yes move GPs if you possibly can.
I appreciate your comments, as ever. You give me strength.
If and when my views during appointments are dismissed I have decided I will vote with my feet and make changes that may include changing doctors.
I am no longer prepared to sit and listen to opinions where medics do not provide their evidence to back them up. And certainly, if I am not given an opportunity to participate as a partner in my own care, I shall leave.
I will then contact PALS (or PIALS as some of the patient advocacy liaison services are called), and let them know why.
Again, I will request a letter explaining how and why I was not treated with respect.
As ever, I will thank medical teams that recognise patients as people and partners in their own care plans.
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Allergy skin testing / Cutaneous lupus 
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