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chas
02-28-2009, 07:47 PM
After getting a diagnosis that wasn't one where the doc said she could not diagnose me with Lupus yet, I was telling my sister that perhaps she might want to look into all her health issues last year in a similar way because last year she had skin rashes and all this other drama with chest infections, heavy menses and related failed operations and failed hormone treatments.

After suggesting we are genetically prone as my other sister definitely has crohns disease she informed me that I have not been diagnosed yet she certainly has no plans to look for something that is not there. I guess I should have expected this. After christmas she said she felt I was just run down and had perhaps eaten too much - apparently everyone felt bad after xmas because they overindulged. I asked her if she also experienced joint pain but she chose to ignore that question.

I hate explaining to people that this is not case of hypochondria. But what is the point. Next time she gets ill, I will tell her it might be better to visualise a positive energy so this stuff will go away.

sick n tired
02-28-2009, 08:22 PM
Hey Chas,

I get down when people don't believe me, too. I have a time with my family. By family I mean birth family, not my kids and hubby. Perhaps your sister just doesn't want to think about it.
At any rate, I do understand...I stopped sharing with my birth family except the bare minimum and it has helped.

BonusMom
02-28-2009, 09:15 PM
Since my husband isn't willing to learn anything about Lupus and my brother and wife are just as critical as your sis, I made an appt with a counselor for Monday. At least she'll listen--I'm paying her to.

My friend of 20 years believes I just need to take vitamins and everything will be ok. I wish I could be more encouraging, but I don't have any ideas yet myself. It's very depressing :(

SuperGiv
03-01-2009, 03:33 AM
It's so infuriating. I'm very lucky because my mum, brother, grandparents on mums side and my boyfriend all realise how ill I am. But on my dads side, I got told I'll grow out of it (1. I'm 19, 2. Theres the *no cure* issue), my friends all underestimate how ill I am and seem to think I'm milking it and being a hypochondriac. Also, I don't think my flatmates fully understand whats up with me, and when I'm in my room all day because I'm ill and can't walk they think I'm being anti-social, so none of them come and talk to me anymore...

TobyJug
03-01-2009, 03:52 AM
yeh I know what u all mean,
I am only 27 and look like a fit healthy bloke, people really do not understand how sick I can be..
But hey I suppose that just comes with the joys of lupus....

I was at the benefits office teh other day because I am trying to get some benefits and she told me that a big healthy bloke like me shud pull my finger outta my ar$e and start working a bit harder...

hahaha
I reacted calmly told her what lupus is and what is does and then got up and left...


Girls don't let the naivety from people get u down chin up......

rob
03-01-2009, 05:22 AM
I'm the same way Toby. Folks see a healthy looking guy when the truth is I am anything but healthy. I hate to sound overly negative, but I find that I have so little tolerance or patience for those who don't believe me, that now, I just agree with them to shut them up. Yep, I'm a hypochondriac. Yep, I'm lazy and milking it. Yep this is all so much fun for me. I made it it all up so I could just quit a six figure career and go on a meager disability payment each month. Just take this and it will go away. Just do that and you'll be cured. People are so full of s--t. I guess I've become bitter. But it does help me to just blow people off by pretending to agree with them. I refuse to waste what little emotional strength I have left on dealing with them. They live in a different world. Their world in far far away from mine, so I stopped my futile effort of trying to explain things in hopes of receiving understanding from people who are totally incapable of it.

SuperGiv
03-01-2009, 05:53 AM
yeh I know what u all mean,
I am only 27 and look like a fit healthy bloke, people really do not understand how sick I can be..
But hey I suppose that just comes with the joys of lupus....

I was at the benefits office teh other day because I am trying to get some benefits and she told me that a big healthy bloke like me shud pull my finger outta my ar$e and start working a bit harder...

hahaha
I reacted calmly told her what lupus is and what is does and then got up and left...


Girls don't let the naivety from people get u down chin up......

I can see where your coming from, im 19, and dont look ill at all, and i went to the disabled students office the other day, and have to justify to my friends as to why i should get disabled student allowance... and thats not even cash just equipment to help me do ym degree!!!

tiggerlishus - Heidi
03-01-2009, 06:13 AM
I know exactly how you feel its like you need a big sticker on your head saying yes i am actually ill!! just because i am not in a wheechair or have a broken leg or something it means you can't be ill it must be just all in your head and you just a lazy mear that needs to pull your finger out! i have had experinces with docs, so called friends and family members and work colleagues and have come to the conclusions those that matter care and those who don't want to understand don't matter!! sounds bit harsh may be but with this illness have enough to worry and stress about which makes your illness worse with any add pressure like that. don't get me wrong i know it not that easy but after 7 years of it just get to the point where you have to let things roll over you after awhile any who gone stop rambling just know where all here for you and as tobes said keep you chin :) xx mwah xx

Angel Oliver
03-01-2009, 08:16 AM
Just sending all of you gentle hugs and so understand this post. I may copyright a plaster bodycast for us all to walk round in.....then they'd believe and understand and know for sure just where on our body we all hurt. It will be made with flashing lights around the head to represent emotions......i'll start work on it now :)

Love and understanding
Angel.xxxxxxx