Arghhhh! I’m not imagining it!

[bexsmith23]

When you haven’t had a proper diagnosis yet and a close friend asks if you think your symptoms are all psychological ..... 🙄🙄🙄

[Spanielmadlady]

Hi.i bet there are very few of us who havent had that experience......tell them to read the spoon theory x

[Wendy39]

Groan....

I think we can all relate to this! I've had friends and family say some clueless things to me since my diagnosis 7 years ago. They didn't mean any offence but I definitely took it.

A friend who is celiac said to me, "Oh don't worry, you'll be fine, I have an annual blood test and then the nurse telephones me to make sure I'm OK and that's it............nothing to worry about".

My sister has EDS and she experiences this too.

It depends on what your friendship is like, whether or not you can explain to your friend. Sometimes I have the energy to and sometimes I don't. Sometimes we're not in an appropriate place to have such a personal conversation.

Send her a link to the LUPUS UK website and their publications. I think there's a DVD for friends and family in the shop online too.

There has also been a medical research paper published recently about doctors not taking lupus patients seriously enough and making them believe it's all in their heads. Lots of lupus patients get diagnosed wrongly with depression and anxiety etc, when they have lupus. Actually depression and anxiety are symptoms of lupus.

Good luck with your friend.

Best wishes

Wendy

[bexsmith23 in reply to Wendy39]

Thanks, just needed to vent that!! Don’t think they meant it quite the way I took it, but feeling pretty rubbish, on strong antibiotics and battling a virus ..... so it didn’t go down too well! And yes, definitely don’t have the energy to explain just now! Thanks for your reassurance all 👍🏻👍🏻 Needed that!

[Wendy39 in reply to bexsmith23]

Sorry you're having a rough time. Virus' hit us harder than others and can trigger lupus symptoms or a flare. So get lots of rest and fluids. That's why this group is so good, we've all been there and we all understand. Having an invisible illness is very frustrating in many ways! Wendy

[RosieA]

Yep! It kind of goes with the 'oh you look so well' - implication - your not ill! We believe my grandmother had an AI disease, always, exhausted, dry eyes, sore joints etc. Her GP wrote her off as a hypochondriac, so very sad. A medical friend of mine thought that my extreme reaction to the allium family might be in my head. It was so reassuring to read on the Johns Hopkins site that garlic and onions should be avoided and the reason given. The saddest thing is that it can lead to self doubt. xx

[Krazykat26]

That's it..get it off your chest bexsmith 🤗you're safe here n we all understand I reckon!!

Yes insensitive comments from friends n family r really upsetting, especially when u feel unwell already!!

I think the main thing is that u post on here n then by the time u see your friend again u will maybe be able to tell her/him how u felt about the comments. 🤷

First n foremost though u gotta be gentle on yourself right now n try not to stress too much coz as we know stress drives lupus!!

The spoon theory is definitely a good tool for family n friends to help them understand a bit more about how it is living with this condition..every day!! I showed it to mine n now they totally get it n it's great coz I don't tell them I'm unwell now I just say low on spoons n they understand.

Take care n be kind to yourself 🌈😽😽xx

[Hidden in reply to Krazykat26]

This so fits with my experience of people. Never heard of the spoon theory do we threaten to hit them with it 🤣 seriously though what is it ? Thanks

[Krazykat26 in reply to Hidden]

😹now there's an idea!! 😹

If u Google the spoon theory u will find it easy enough!! It's a talk by a lady called Christine (can never remember her surname but it starts with M)..she has lupus n she gave this talk at a lupus UK conference some time ago!! She tells a story of explaining to her friend what it's like living with lupus..they were in a restaurant when her friend asked her what it was like..so she gathered up all the spoons on the table n then used to spoons to explain how much energy it takes for us lupies to do even the most normal tasks!!

It's a good way to get friends n family to gain better understanding of how lupus affects us..day in..day out!! It helped my family n close friends n now they get it!! 👍🌈😽😽Xx

[CecilyParsley in reply to Hidden]

That made me laugh . Thank you I needed that 😂😂😂🥄🥄🥄

[Wendy39 in reply to Hidden]

I found this on the Spoon Theory.

However, I much prefer your version of hitting people with it! Brilliant. Made me laugh this afternoon.

healthline.com/health/spoon...

Best wishes

Wendy

[Hidden in reply to Wendy39]

Hi Wendy most of my friends know that I manage my 'stuff' and only mention it when they need to be aware of something. I want to be know for Me and not the "Stuff" first. However I have one friend who has been a right pain always asking for blow by blow details as soon as we meet. It makes me cringe and I have tried explaining that if she needs to know more I will tell her. Instead she could ask me about what I'm currently working on. Last week she really got me cross so I have decided I'm going to ask her first how her piles are !!! I have no idea if she has them and I know it's not nice on my part but without a spoon it might be the only answer !!!She can always disconnect zoom. I'm just fed up of people who having early on shared some information thats all they can see and not me first. Rant over I'm just glad it's just her as other friends are great....I wonder if she does have piles. Don't worry the question will probably just stay in my head 😊 (Yes I do know how painful they are !)

[Wendy39 in reply to Hidden]

I know what you mean! It’s difficult on both sides. Early on I was out with friends and one asked how I was coping and before I knew it I was crying and hoping the ground would open up and swallow me. All of my friend's eyes on me. It taught me that discussing my illness in public was too unpredictable! I can’t be trusted! So they don’t ask much and if they are worried they’ll ask me one to one or message me. I get teary when I’m flaring I’ve learnt too. Good luck with your friend. Can’t wait for an update. x

[svfarmer]

Very frustrating for you - I regularly get close friends say to me you look so well - it’s make up I say 🤦‍♀️

[Meg52]

Don’t let anyone grind you down! Lots of us have been in the same position, we know how you feel.

Keep your spirits up. Be kind to yourself, get plenty of rest and recover from the virus. You don’t need the extra stress, it just causes flare-ups.

[bexsmith23]

Thanks everyone for all your lovely comments ..... 🥰

[SamDBH]

Hello

I completely get it Hun. I had ten years before they diagnosed me. I got called a hypochondriac by everyone including my doctors. Got told everyone gets aches and pains. Etc etc.

The thing is, even when you get a diagnosis there will still be people that don’t get it.

It’s such a hard thing to understand for people unless they experience it themselves. It’s not their fault.

You have to hold on to how you feel and stay strong. You are the only one that knows how you feel.

Good luck with everything and the diagnosis

[bexsmith23]

Thankyouuuuu all, such a great supportive group! Feeling bit better today ..... and got another call from the doctors 👍🏻👍🏻 They have been pretty good at the GPS so far, to be fair, just a bit slow!!!

[CecilyParsley]

Hi Bex, I think everyone here has had that said at some point. It hurts more when t is someone close to you. To be honest I have even questioned it for myself when Consultants have given a different diagnosis. If you do not get the ..” if you just” lost weight, got some fresh air, tried aloe Vera, exercised more, thought about something else ...then you will be fortunate. Please don’t let people with little understanding upset you too much. AI conditions are complex for Doctors so are difficult for friends and family to comprehend. If they are a good friend they will listen to you and try to understand and help. Xx

[Insomniacette]

Let it all out! I've had my fair share of pillow screams/silent internal screams over this too. My personal favourite said to me whenever I make healthy choices for myself "I think you're deliberately limiting yourself and it makes me sad to see that". AAAHHHHHH!!!!

I'm liking zippyzap's version of the spoon theory! 😜🤣