I'm sure everyone on this forum has a few of these! Things people have said that make you want to pull out your hair.
My examples...
My Mum lives abroad, she is a worrier and likes to talk about my illness a lot to her friends who are mostly very cynical older British people, through her I have heard so much utter b*llocks including:
- I knew someone who had that she took Vitamin D supplements/St John's wort/insert vitamin here and that cured it!
- A vegan/gluten/wheat/dairy free diet will cure all of her symptoms!
- You just need to exercise more/eat healthier
- Stop thinking about it and you'll be fine
- you just need to have a positive attitude
- Stop over exaggerating/ being a hypochondriac, it's not that bad!
- There's so many people worse off than you...
- *when you explain you're condition to someone* oh thankfully its nothing serious or, ''oh, is that all''.
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Hnewman2
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Indeed Hnewman2. It's really unhelpful and makes us feel a whole range of undeserved negativity. Shrugging off comments like those is, unfortunately, part of the process of learning to live with lupus. Hugs x
My nan used to call it "that thing you've got ... limpus" which at least made me laugh.
- I can't be allergic to the sun that's ridiculous
- I just need to get out and get some fresh air
- when suffering from severe fatigue my doctor told me that getting out for a walk and some exercise would help (while I was struggling with crutches because of my hips!)
- with brain fog "oh I do that all the time when I walk into a room and can't remember what I wanted it's age" ... I walk in a room and forget it's called a room! It's NOT the same 🙈
- fatigue ... that's age that all my friends get too apparently. Again NOT the same 🙈
- well I look well anyway and my cheeks are nice and rosy 🙈🙈
Lumpus did make me laugh! 😂 Yeah I totally forgot about the sun one! I always get told It's just the UK weather and I need to get some sun and the same with fatigue. Oh you're just tired because you've been at work all day... noooo it's totally different kind of tired 🙄
... last time I said "I feel weak because of the anemia, I can't wait for you because I need to eat right now" the answer was "you don't have that, your cheeks are rosy" 😄 yes, and it feels like tiny paper cuts, very cute, though.
Oh, and more recently "there is a cure, why don't you take it?" ... maybe because I am not a mouse
My whole family are like that, I get But............ you look so well or ........ we all have aches and pains you know especially at our age. Doesn't matter I was young when I started this. Then I get tales of an acquaintance who really is ill. Another relative says. ......... when I'm on a bad day I just get on with it and push myself through it. 😡
I don't argue my side any more, just change the subject and try not to discuss it ever again with them.
Thank you Mabsie! I've already gotten used to it and I just say "great, thanks" when family say things like that 🙄 Im quite young at 20 and have been having muscle and joints pains for a long time which I was always told was just growing pains...
Yup, diagnosed with growing pains when I was twelve! No change there then. I'm an OAP now! My Mum was told I'd outgrow it. 😀 Hope you're getting treated now?
I forgot about the one where someone tells you they'd handle it better ... I needed an op on my wrist once and my ex sister in law told me she wouldn't have an op unless she really needed it. I wasn't having it for fun!!! I get that with the doctor one too - "I rarely go to the doctors unless I really need to". Really? I just go for a friendly chat 🙈
With hospitals it used to be my weight (they failed to diagnose my underactive thyroid!) and literally the second I turned 40 they changed to telling me it was my age. Apparently if you're "old" you can be overweight so that's good I suppose 😂😂😂
And my favourite was last year when I needed a steroid injection - my local doctors were telling me I couldn't get it done there as they only had one left and it would leave them without any if someone needed one urgently .... ummm what like me you mean? Even the other doctor looked at them a bit bemused at that one and piped up that he had some in his store and I could have that.
Oh and nearly forgot the doctor who is into all the hippy healing stuff who said it was all down to my hidden rage. Apparently I seemed quite tense when I saw him ... odd how being in severe pain does that for you. He asked what I do to let it out when I get angry at my illness. I genuinely told him "sometimes I say grrrrrr" while he nodded understandingly. Even in pain I struggled to keep a straight face ... Luckily I have a highly tuned sense of humour
The only one of those comments I'd listen to is 'Have a positive attitude' dump the rest in the bin! Learning to live with Lupus is the hardest thing but don't let it beat you. Keep fighting back!!!
My S.I.L. suggests I train for a marathon! Apparently you can walk them (did you know?). Told her I'd get back to her when I could get up the stairs & to my letterbox.
Thanks for raising this subject! It is so frustrating when people try to be helpful or try to make you feel better by saying that they feel tired all the time too, etc etc. I had one the other day when I was telling a colleague I felt worse in damp weather- she told me to try using a light box. Someone also suggested vitamin D, even though I've been taking supplements for 2 years and feel no different. It's kind of like telling someone with epilepsy to take omega 3- people just don't get that it's an actual disease that has no cure, and people don't know what it is which doesn't help.
Honesty I was a bit concerned writing this post that some people may be offended by it, but I'm so glad nobody has been (or at least said so) I do understand that people are trying to make you feel better but they need to realise what they are saying. You wouldn't tell someone with cancer that youve felt how they feel sometimes but you just get on with it...
Yes exactly, I was actually going to say you wouldn't tell someone with cancer to try multivitamins and that we all get tired, so why do people think it's OK to say it to people with lupus? My guess is that they just don't realise how severe it can be and people don't know enough about it. Which is strange considering it's not actually a rare disease! It's not like it's something which can't be given an official diagnosis..it is a real disease. And I don't understand why GPs don't have much knowledge of it either?? It's taken 7 years for me to get anywhere, but have been having symptoms for 9 with no answers..It's insane!
I had a great one today! I was told at work that my recent hospital admission (plueritis) was due to me thinking my chest hurt and therefore a mental health issue...?!
Whaaaaat? Where I worked, HR started sending out pro-formas asking why someone was ill, and if it was likely to happen again. A colleague with depression following his father's death gave them a long treatise about death with a carefully annotated explanation of various views on death, concluding, in his view,it was unlikely to happen again. The recipient demanded he be disciplined for that, until someone with a brain instituted retraining and fewer automatic pro formas.
This is one of my main pet hates, I see people look at me and I know they are thinking, you've brought this on yourself. Due to all my SLE meds I have put on so much weight. But what people don't see behind the scenes im juicing, sticking supplements and vit this and vit that into my body trying to do my part and eating healthily.
At the end of the day, there is not much we can do to help the situation. I just wish others could understand this without judging us 1st, or putting their 2 bits in that only hurt our feelings!
If only some juicing and a positive attitude could fix this hell!
I am feeling like rubbish at the moment, trying to eat healthy. My mum had colonoscopy 2day so i had to do a bit of chores. Got my son ready 4 school drooped him off, took my mum to her appointment , had hydrotherapy session my back was killing. Got home expecting my occupational health therapist 4 a home visit at 2pm. Sat in front of a tv watching eastenders suddenly my phone rings and the time was 3pm 😫 time 4 school run. I was manic almost peed on myself. Who was on the phone? My 2pm appointment saying he was running late, i asked him to stay whereever he was bcos am so late to pick my boy. My mum (bless her) seeing how tensed i was decided to come with me, worried i might crash into smthing or smone.
Anyway got there in d end he was d only one left. We got home helped change him, had his dinner. I allowed him watch tv bcos i was too exhausted to do anything meaningful. Took me awhile to get undressed, had painkillers b4 i started. Got downstairs and started processing smthing healthy to eat 4 supper but want i really wanted was a glass of rosie wine😂. I had red and white but it just wasn't it. So i settled 4 a becks. Had my salmon and beans then had my bottle of becks. Normally have fruits at night so by 7.30pm i went to get sm fruits 4 me and my son. I said to myself have another bottle. I just feel rubbish and i want to be allowed to feel rubbish. Thank God my mum is abit unwell to sermonize .
I had a core decompression surgery on both knees and ankles last april. A family friend came to see me at home and he asked if i had any implant so i said no that the dead bones where drilled out to allow blood flow and see if the joints could be saved. He turned around and said oh thats not a serious surgery then it is just minor stuff.
This same person invited us to his place for a party so i took a Guinness and later on after the party i heard side talks that they were saying " i thought she is unwell and she is taking alcohol ". The last one that really pissed me off and i am thinking i will never go there again. I had a fruit drink and after sometime i reached out to get another non alcoholic drink and someone said to me " oh take it easy on the fruit drink bcos of sugar ". Excuse me !!what in heavens name is wrong with people.
Wow !! Thats alot on my mind ! I am exhausted. I am not sad but am not in a good frame of mind at the moment too. Thanks for the post i needed to ventilate.
Hurts more when GPS who know nothing make comments that are annoying , I was at the GP surgery a couple of years back can't remember what for because I rarely go to see GP as I see consultants every 3 to 4 months . Whatever it was we were discussing I don't know but she looked at me and said " I don't see you as being disabled " . They make you feel as though you having nothing wrong with you and you are imagining the whole thing even though you are on steroids , immunosuppressant drugs , warfarin to thin your blood after 2 massive blood clots , osteoporosis medication , blood pressure meds etc etc . I once went to this GP with pain in my ear , as she was about to try to look in the ear she said have you noticed any hearing loss ? I said I lost my hearing completely following my acoustic neuroma surgery and there's no point you putting that in my ear I had my ear drum removed a few years after the surgery , she just looked blank like they do . My current GP surgery are as bad , I have had a small red lump on my chest for years and one GP when I asked about it looked at me as if to say " you are wasting a GP appointment with that , I was actually there regarding a bladder infection but mentioned the lump while I was at it . I said I am only mentioning it because I am on immunosuppressant drugs , total blank expression on her face , obviously doesn't know you are at risk from skin cancer when on those drugs , probably didn't even know what an immunosuppressant drug is . They don't read letters from the consultants just file them away .When I asked for a letter to help with my esa appeal they refused saying it would just be an opinion as to whether I was fit for work . If GP,s don't understand this disease then how can anyone else who isn't medically qualified be expected to . Sorry for the long rant but as you have said this lack of understanding is upsetting for us all .
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I'm going to start taking LDN
Can a needle be reused for multiple blood test tries? 
I Could Cry but damned if I will
Just because I've got Lupus it doesn't mean every pain I should be prescribed mind altering drugs
If you haven't already done so please, please ask your doctor to check your vitamin D levels.
