Hello all: I had that question come down the phone the other day from one of my oldest, best friends who is more like a brother (& his wife is like a sister). I just paused, thinking: even he doesn't get it...after all these decades & all my illness.😖
So, I said to him:
come on, you know that I'm 62 and have an infant onset incurable progressively debilitating chronic multisystem relapsing & remitting autoimmune condition, which is more or less in pharmaceutical remission some of the time, which NHS treatment is helping but even so this is essentially palliative care (of course he didn't say a word after that, poor guy...I felt really mean, so changed onto a cheery subject..it's not easy for them, is it?)
Since that conversation, I've been jotting down as many of these sort of exasperating comments as I can remember: 'one liner questions & statements' friends & family have made & just keep making...no matter how much they know about me & my health. My feeling is that a collection of these comments will be good: I can use it to practice making pithy replies!😆
So: Can you help me? I'd be very glad of any of these sort of 'one liner questions & comments' you're up for sharing here!
Another example in my listing:
"Oh, I thought you're in remission"
And if you have any really good "one liner replies" to share, please please do....I can use ALL the help I can get! You can tell from the reply I gave my poor friend, above, that I need something short I can actually remember and that doesn't seem so mean...although I do like that good old reply:
I do not look sick, and you do not look stupid. Looks can be deceiving
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I even get from my mum ... "There must be a cure for you!" I said to her, well there isn't really a cure for Cancer ...her reply, "well thank goodness you haven't got that!" She then changes the subject!
The "I know somebody...they've recovered" comments really annoy me too. When I told my new manager about my diagnosis, the conversation went along the lines of....
Manager: "Oh, my friend's daughter had lupus. She had it really bad. I mean REALLY bad. She's fine now after treatment. She didn't let it stop her from living a perfectly normal life"
Me: "That's wonderful about your friend's daughter. My sister had lupus too. She had it bad too. It killed her.
What a great post.....I've been in that awful situation soooo many times when I'm just left speechless by peoples comments and don't know how to respond (then usually end up in tears with my husband) ....if I have some good responses up my sleeve I'm sure it'll help me a lot!
...." you shouldn't drink diet coke, it has aspartame in it which can cause lupus. If you stop drinking it, you wont have lupus anymore"!
" If you're so tired, just go to bed earlier. that's what I do !"
" I have pain too and I'm still taking my kids out/going out"
" You'll grow out of it!" (I'm 41 for Goodness sake!!)
I've lost alot of my hair and so I've been wearing a head scarf. It amazes me that random strangers feel they can come up to me and ask me personal questions. I never know what to say!
" Do you mind me asking but what does your husband really think about the way you look"........ left completely speechless with this one!
That deserves an answer like "Oh don't worry, he's blind. And anyway, we're both pleased I don't have much hair because it would just get tangled in his mechanical leg*!"
Oh boy, flow: EEEEK....only a few years ago, but before my lupus was recognised, I had one of my sisters in law tell me (totally out of the blue...unrelated to anything that was going on):
he'll never want to make love to a cripple like you again!
I GASPED & stared in awe (as a young woman, she'd driven her car over a level crossing and been hit by a train: spent years having corrective surgery...is vvv lucky to have sorted that out & led a v active life with no hint of a limp...but she also has early onset crohns with especially bad complications...at nearly 70 she lives alone in bitterness...she seems to enjoy making malicious wisecracks...and I don't want to play her game...I usually try to just ignore them.... and make sure I vent about them to someone who understands. What's the moral of this?...you tell me....I don't know...but we can't explain away every horrible comment just because we're mainly sympathetic towards the speaker....can we? Well, this is a dilemma I do find myself mulling over at regular intervals)
I'm much better at imaginary retorts than real ones! Not long after my hip replacement last year, my brother told me he understood the pain I was in, because he'd had a... circumcision! That would have been the perfect moment for a witty come-back, but instead I was speechless and angry!
I had a hip replacement last year, and in the year before surgery, I was limping, in awful pain that must've been etched on my face, and gained a lot of weight... This year, I look better but often feel worse... I've lost count of the times people say "Wow, you look well!" I resist the urge to say "I may look well but I feel shit!" Mostly.
EXACTLY: and I like your honesty: the "mostly"...I can relate to that a lot...
I had this problem at a party last night from several old friends. The first one really did look crap and was eating her way through all the crisps and cheap sausages she could lay her hands on while sitting by the open garden door cooling off a hot flush. She said "well before we went off round the world for a year I thought you were looking great despite your arthritis. But now you look even younger and better. But (a mutual friend) told us you've been quite ill this year. So how do you do it?" I just leant forward quite close and whispered "steroids - want some?" By this time I was too cold to say another word so I grinned at her and walked off.
Later someone said "every time I see you you look better". I replied "thanks - but last time we chatted a few months ago and you said that I ended up in hospital with blood poisoning a few hours later from an infected wound in my navel". She was actually being lovely and we are about to leave our home town of 26 years so it was all said as lightly as I could muster because I do really love these old friends, just as you love your brother figure friend too. Nevertheless some punchy but humorous one liners can do the job much better than anything more long winded. I still got plenty of hugs and promises to visit us soon so obviously got away with it?!
While in hospital during admission no.2 this year I met a woman with advanced Scleroderma. She told me that, in her long experience, people with autoimmune diseases tend to look well. She is a retired nurse and she explained her theory that we a) look after ourselves extra well to compensate for the drugs and b) our bodies are fighting the nasty things as well as the important things that our immune systems should be doing for us. So she felt that having an overactive immune system can make us look extra well too. Twitchy x
Oh my gosh: this is what we're dealing with day in, day out....you describe it beautifully, twitchy!
Yes: gosh: I do agree with your retired nurse friend's observations: e.g. my mother mostly looked great although hypothyroid, I've lived 30 years with my husband mostly looking great despite crohns, and in my 4 years meeting others with autoimmune diseases again & again I see many of us mostly looking great.
Yes, I think your retired nurse friend is pretty much describing how I mangaged to survive with un recognised infant onset lupus & immunodeficiency for 50-something years...except I wasn't on lupus drugs...I was just on somewhat numbing prescription NSAIDs + analgesics + antibiotics, and obsessively lifestyle managing my conditions with the help of complementary therapists. Of course, there were phases when I looked dreadful, but mostly people saw the veneer, and wouldn't or couldn't look hard enough to see how poorly I was feeling all the time underneath the veneer. one thing I mostly hid very well, was the extreme tiredness...I could because I was home alone while my husband worked away in London during the week...I did nothing but go to work where I'd self medicate with caffeine, and then come home, try to eat something, & go to sleep right away.
After nearly 20 years of that, the veneer cracked big time and then I really did begin to look poorly all the time, but people just assumed that was the 14 year old tumour Drs eventually found and/or my long term spine condition: both much easier for them to relate to. Now the same people see me and simply cannot relate at all to the implications of infant onset lupus + early onset immunodeficiency and the meds that are now helping me look & genuinely feel better at 62 than I have since my 20s
Yikes, twitchy: you've got me going again!
Wishing you all the best with this big move...a wrenching time for you all...and an important move towards better diagnosis & treatment
XO
As a nurse we get asked questions about treatment. When dealing with a patient with recurring chest infections due to COPD, and refusing to give up smoking, the patient asked whether they could get a lung transplant to ease the coughing!
I find the "You're looking SO well " thing one of the worst parts of chronic disease.
One old friend, a dear soul said as much to me and I replied it was the steroids. She replied, " Gosh I'll have some of those!"
I had no answer! She then said how well her old dog of 16 was doing on high dose steroids, so why did they not just give me more and more. Trouble is if you actually try to explain you see their eyes glaze over as basically they can't understand it at all.
You then feel they think you are a lazy hypochondriac!
It often makes me want to live on a tiny island with husb, dog and my knitting!
I feel a total alien!
Even my dearest friend who has seen me go through the decades of this disease nodded in sympathy as I said I would so love to get away for more little holidays, just in this country.
She then said , Well why don't you, just get up and go, just do it"
After that I thought no one can actually understand unless they have a chronic illness themselves.
Thank God indeed for this forum!!! We have an uncritical listening ear and many shoulders to cry on when we need them.
You've put it all so so well, cuttysark! I regularly run into the thing about pets being on steroids....oh my gosh....and the eyes glazing over when you have a go at explanation...GRRRROAN...many thanks for your reply
This is such a great post, thank you. The responses are hilarious, they made my day.
I can only remember one from my niece (27 yo) who, after dragging myself out of bed during a nasty flare to meet for a coffee, she asked me when will I "do my roots". I didn't know which reply to give first: "because I can barely get out of bed to get dressed let alone go to a salon", or "because I cant do it myself anymore once Plaquenil made my hair so coarse and white", or "because the way I look is no longer my priority, being alive is", and so on.
From sister in law...'at least you're not a man the man-kind of Lupus is the bad one, they get really sick'. From my mother in law to my husband 'she looks fine, she's a lazy bitch,' and from my dear, alternative lifestyle mother, 'I cured myself of Colitis by eliminating gluten. If you eliminate gluten I think you'll find you lose that systemic 'bloat'".
I don't. My Italian husband has a lovely Italian saying: non se puo vincere contro l'ignorance...you can't win against ignorance. I tell myself their denial is a function of their fear that I may get so sick that I will die and so the denial protects them. Obviously, they aren't part of my support system. I walk away.
I am lucky now I suppose as don't have to hear the in law comments as after too many to me and him I think the last one from hubby,so lucky he is wonderful, made the biggest point.
In law -" are you really going to spend you life and kids with someone like that?"
His answer was " Definitely I chose her you just happen to be related!"
At which point he made the decision to have no contact with them since.As he put it to me ,"the drink might look nice and be familiar if it is toxic it will kill you in the end."
As it happens he has become a much more confident and relaxed person since the decision so I guess he was right.
Good for your hubby. I went no contact with my in laws too. You are NOT lucky and neither is your hubby because you've been robbed of a loving family. However, the next best thing is freeing yourself from their toxicity so you can define and create 'family' for yourself.
That's really appalling Belee - thank goodness for your husband finding such a great come back! And To think I find my mother in law fairly annoying. But she always asks my husband how I am and seems genuinely concerned. I think my own late mum would have been a lot less patient with me. She always worried terribly about my tendency to be introspective./ self indulgent. Which was pretty hypocritical actually when she was often on the brink of madness herself and very demanding of me as her daughter.
When I was terribly overweight about 20 years ago she advised him to have an affair and let me know so I would have to lose weight in order to win him back! Needless to say I just ate more to punish her!
On being diagnosed with Graves Disease years ago: Are you sure you have hyperthyroidism? You've put on so much weight/you're always tired. You're lucky, you can eat whatever you want. I thought you'd be better by now (a couple of weeks post RAI). Stop doing that with your eyes. OMG, look at her/your eyes...
Last year, being told to 'perk myself up a bit.' - with an iron count of 3.5
Are you finished with all your running to the doctor's?
My aunty had that and died of it.
It can't be that serious because you are still out running/at the gym etc.
On the other hand people have been really supportive and positive and look out for me. I think everybody has some sort of battle going on and it is important not to become so self obsessed that you fail to notice other people's trials.
And I do agree: the supportive positivity is at hand...
in fact, our great friends just left here (he was the one making the comments down the phone in my intro to this thread)...they had come for the day...having recently returned to live nearby again after living in another country for a year. Today he was really thoughtful & kind: asked sensible questions & made fair & encouraging comments...showed real empathy. She was the same. And we related to them likewise. They are dear old friends
Basically, I guess, most of us are dealing with lots of tough stuff of one kind or another in our lives...whether we have immune dysfunction or not. I try to give others the benefit of any doubt when they make hurtful or silly comments about lupus & me....and I hope others will give me the benefit of the doubt when I put my foot in my mouth....cause for sure I'm only human and am bound to slip up sometimes...
But it's great to know our community is here on forum, sharing as we do...and that we can vent about this sort of stuff when we need to. I'm thankful every day for you all
When I was diagnosed 15 years ago upon telling my sister in law who is a doctor, received the tossed off reply" oh I know someone with lupus and she plays on our netball team". I do wish I'd had the experience to reply something such as - good for her!
I loved your post !!!!! It really lighted up my evening. A little stressed out and feeling no good so this made my night!!!! I need to take lessons from you!!! Thank you for helping helping us have have a back bone.
Agreed, cristy: this thread...all these wonderful contributions from so many of us TOTALLY made my evening glow...and this morning the glow continues...really really fantastic, life enhancing stuff from everyone. AND Thank you too
I love this post alot(lol). An acquintance once told me that she has the gift of healing. So i bumped into her one day and that day i was in somuch pain. Then she said to me do you want to be healed from this illness i looked at her and i was almost at edge of plucking her eye out. I smiled and kept my comment to myseld lucky for her my mum was there to change d subject.
A family member who is diabetic once compared diabetis with lupus. She said she has seen people on tv who have been healed from lupus and that diabetis is more serious so i should pick myself up and move on. I said to her if lupus can be healed diabetis too can be healed. My faith is very important to me it has been my means of survival so it annoys me when some trys to communicate the fact that am not praying enough or am hiding behind the illness.
ijeasike: thank you for these deeply felt and very moving examples....they mean a lot! last night my husband & i got up at 2:30 th watch the lunar eclipse: between that & this wonderful discussion, the past 24 hours have been extraordinary for me....i woke up this morning and went on forum to see who had replied while i was asleep...i am utterly blown away by the tremendous responses...you are all wonderful...xo
Yours answer was brilliant. I will have to memorize that line because I'm the same age as you, sans the infant onset because I was only diagnosed at 61.
thanks nanleighh: and i bet your symptomology (great word, sheesh) was developing for years before your diagnosis...well, for me, life is really beginning in my 60s thanks to my lupus (re) diagnosis and you, my wonderful lupus friends. am hoping your treatment plan is helping you a lot too (on balance..right? we'll never quite manage to actually be 21 again, i guess..but stranger things have been known to happen...am thinking positive...)
Yes you're right barn clown, I've been having symptoms since my 30s off and on but not diagnosed till 2015 after a very smart nurse practitioner did bloodwork on me because of my facial and neck rash. I don't seem to have the balance for medications yet, But sincerely working on it.thank you for all your kind advice and support. Nan
I too felt the comments about looking too well to leave work, when managing on steroids and painkillers. However, the best one is a close family member who prides herself on not taking medication. Good for her I say..
However, when staying at her house, she watched me take a large number of tablets, iron injection, eye drops etc and said " I'm sure you would feel better if you just detoxed, and drunk more water. The odd paracetamol does it for me."
Sitting at hospital today for 3hours with youngest son having ecg,bloods etc . and these two women in the blood test waiting room ,which was full,kept looking at me ,actually my flared up malar rash,and making side comments to each other and sniggering then one said loudly to me"that sunburn really doesn't match with your lipstick,you should go for a lighter colour"
My return was" whereas your insults match your ignorance perfectly! "
I've had this comment from a neighbour 'you've been put on this earth for your beautiful smile and eyes' I didn't know what to say at the time. Same neighbour Also gave me the inference that I was ill because I didn't go to church often enough!. She was a great believer!.
Have so enjoyed reading your replies as you have too, great post thank you. X
Oh my gosh❗️ That first reply: did you ever figure out what to say...it was such a bizarre comment...seems almost Victorian to me: the concept of the beautiful brave Pollyanna languishing or something....flippin heck! and the church thing is similar to my mother who is certain I'm not praying enough, or praying the wrong way, or something. Great reply, many thanks misty. Glad you've enjoyed this thread...I'm just thrilled everyone joined in: every reply is v special! XO
Such a fantastic post - and everyone's replies are so brilliant - depressing how easily we can all relate to so many of the inanities - and yet so comforting.
Clearly we are an incredibly polite bunch!
I think my least favourite question has always been around the lines of, 'But what exactly is it that's wrong with you? Sorry, I just can't get my head around/don't understand/can't remember what's wrong with you.'
Leaving me with the sense that because I haven't explained it properly - enough for them to remember what exactly is wrong with me - maybe I don't know myself/ am confused/ need a second thousandth opinion.
We are all in the shadow of the snappy one word answer: cancer. Anything else is beside the point. As though auto-immune illness isn't life and death!! Friends who have/ have had cancer often think I've got the worse deal.
YES! I both think & feel your summation is perfect. Thanks so much lupusinflight. This discussion is going to stay with me for years to come. It addresses THE most central, personal & crucial aspects of our lives...in which the known unknowns loom large. XO👏👏👏👏👍🍀
Late to the party... but wonderful post, Barnclown, and thank you for replying to us!
If someone who I suspect is n't actually very interested in the reply asks how I am I say "I'm stable....." and leave it at that. If they are kind they may well ask for an explanation and I tell them a little more, and I really appreciate it.
Another useful sentence I have used is "diagnosed four years ago after many years of symptoms, and have n't had a day without some symptoms yet". Puts it in perspective!
the ct of his thorax found a small hilary lymph node
the ct of his neck found found moderate bilateral ertmoidal a course of antibiotics may cure this
his prostrait was found lightly enlarged
at l5/s1 their was a subtle retrolisthesis of not
plus a few other thing AND THE LETTER FINISHED I HOPE THIS WILL REASURE U WITH THIS SCAN AS THE RESULTS ARE UNREMAKABLE whot whot im falling to bits refer also to urologist re prostrait and the doc just got me bloods done and said your results are within range.
so sorry minka...these medics are failing to figure out your complex case. can only be v tough to accept....my feeling is that you need medics with more insight... i wish i could do more to help. if i were you, i'd contact Paul_Howard at head office Lupus UK when the office reopens in the new year: ask for his advice
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PIP
All those who have been in a flare recently, how are you doing? 
ARE THESE typical SLE Lupus symptoms & do you know what was your lupus trigger?
Positive thoughts of what to do on not so good days
Having a stay in my PJs and resting in bed day - but doing well on the whole. Mepacrine seems to suit me. 
