Family just don't understand ....

[georgie63]

If your family doesn't understand how you feel each day, how do you expect outsiders to ?

I've got books on Lupus and I've told them they are welcome to read them, they haven't.

This afternoon my sister has come round, I've come upstairs to bed as I just ache everywhere this afternoon, she came up to see me, and I said sorry I'm not being rude just having a bad day - why what's the matter ?

I said I ache everywhere and she just didn't get it. Her partner has a cold so therefore you can't be worse than him.

But I just thought if our close circle of people don't get it how do we get others to understand us ?

[caninecrazy]

hello georgie63,

my husband had difficulty understanding the effects of lupus especially the persistent chronic fatigue (not to mention everything else) as it is everyday all day . I printed off the spoon theory and gave a copy to all my family too as it described fatigue in a way that made it easier to understand.

sadly my younger brother and sister (who are twins) have chronic fatigue too as my sis has lupus and my bruv M.E. so they know how it changes our lives.

I have made a new request that if any of my family have colds/sniffles etc that they don't visit me until they are better as we have to be more careful.

as for others, depending on who they are I explain as briefly as I can, if they don't want to know or don't care then I can do without them in my life. I know that sounds hard but we HAVE to put ourselves first.

sorry ive rambled on again. just wanted to say you aren't alone.

hugs x

[georgie63 in reply to caninecrazy]

Thank you canine crazy for your reply. I'll look into the spoon theory and see to do the same.

Thank you for your advice.

Xx

[PickledGinger]

I totally understand how you feel, I'm fed up with people saying "you look alright to me" and treating me as if I'm just lazy. My doctors always say I'm the healthiest looking sick person they know, so I get absolutely no sympathy and as I am over weight (as a lot of us are with our cocktail of drugs) I constantly get treated as if I'm just a fat lazy pig! It's the same when I use the disabled bay (with my blue badge) I've had so much abuse that when my days are really bad I opt for a normal parking space because I can't take it. Invisible illnesses suck but narrow minded selfishness is sucks more. The biggest hurdle I have isn't fighting my illness (which is extremely hard) it's fighting ignorance.

[tennissenior]

I totally understand! Because Lupus doesn't present itself physically, few people can understand why we don't LOOK sick! I play tennis 4 days a week - I have to push myself to do it. I also swim every day if I can. My life is labs and doctors. I am slim and attractive. I am also 71 years old. I have to deal with the same idiot questions such as "If you were so sick you couldn't play tennis." If I didn't push to play tennis I would most likely be bed ridden. They cannot see your fatigue, your bones hurting, the effort it is just to survive. Lupus is a horrible disease with no cure; treatments have devastating side effects, and it's invisible! Don't feel you are alone - YOU ARE NOT! My own husband has problems understanding the way we feel, as fo my kids. You have allies who DO!

[nanaber]

I don't post often but felt I had to join in my husband likes to get the sympathy card by telling people how sick I am especially his family yet it's hard to get him to do even a simple task for me so ye I know where your comming from

[georgie63]

Thanks to all of you for your replies.

It makes me feel so much better that it's not just me that's being treated this way. As if this illness isn't horrible enough, it makes people not believe we are ill.

At least on here we can be there for each other, if no one else is.

Hugs to you all

Xxx

[madmagz]

Hi Geogie

I have got one very good way of explaining to people what it is like to feel ill especially when there are no physical signs on the outside of being ill............ The Spoons Theory! But you don't look Sick. It is not as perverse as it sounds, it was written by a young American girl and has been used world wide to explain how it feels to be so ill when we don't look it. I held a charity event and copies of this were being asked for by lots of people in the end I just printed loads off and the almost all went. You can Google Spoons Theory and it will come up and it will amaze you what a simple way to explain to people how you feel. My partner now says to me when we are out sometimes and I am flagging, "Are you running out of spoons?" You will see what he means when you have read it and it is such a great way to describe how I feel. I suggest you read it and print some for others to read it will open their eyes and hopefully make them more sympathetic, I have given copies to lots of people and it is amazing the realisation it gives them.

I hope it works for you too

Madmagz x

[Debbiemay]

I know this feeling, it's frustrating if they can't see it you must be fine !! I'm sure everyone on this forum has had this type of behaviour from one person or another

[Debbiemay]

I know this feeling, it's frustrating if they can't see it you must be fine !! I'm sure everyone on this forum has had this type of behaviour from one person or another

[Hidden]

Reminds me of the time my well meaning mum told me to try and brighten myself up!

[sandwiches]

People who haven't got lupus don't understand. They think that we aren't telling the truth because our illness isn't physical. I used to tell friends how I felt when I was ill, but I don't tell them anymore as all I ever got was their eyes rolling in their head or unhelpful sneering. So I now don't tell people anything, if I don't feel well I keep it to myself. I have previously told people that I have been in hospital but I don't anymore. Someone once said that I was wasting an NHS bed as I looked too well to be ill. I have found that reading Lupus Unlocked every day has helped me a lot. Peoples questions and answers are very helpful for me especially when I have had bad days and depression and I feel no one understands me. Take care. x

[caninecrazy]

dear sandwhiches,

I thought I had written your reply! as I too have given up going to see my GP as I saw a different GP (as mine always fully booked) and he said " theres nothing we can do to help you. you are wasting NHS funds and time. what do you expect me to do?" I left in tears and havnt been back x