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utenutter
04-20-2007, 05:43 AM
WHY DONT THEY IT IS NOT ROCKET SCIENCE PEOPLE I WORK WITH FRIENDS DOCTORS YOU NAME IT I EXPLAIN THEY DONT LISTEN WHY? DO THEY THINK I AM FULL OF CRAP HAD ENOUGH, I JUST WISH PEOPLE WOULD REALISE, IT SUCKS

Kokopelli
04-20-2007, 12:49 PM
Hello,

My husband says he can't understand it (grasp it) because it's not like Cancer in that you can't "SEE" it or what it's doing. There are no definate milestones or schedules for it.

It's also not something the average person is aware of or has heard of unless there is someone close to them with the disease.

My advice would be not to waste your breath on people who don't want to listen and understand. That's part of the reason this board is so wonderful...we all understand even if it is from a different point of view sometimes.

*hugs* Take care

MARYCAIN
04-20-2007, 04:58 PM
Living with a chronic illness is something that a lot of people just don't understand because it's totally outside their experience. Even most doctors are not really trained to deal with chronic illnesses that need ongoing medical care. I think part of the problem is that modern medicine focuses on finding a "cure" for everything - even old age - and they don't focus as much attention on quality of life issues, which are often a big concern in chronic illness. Most people expect that when you get sick, either you get well or you die - and they don't understand that it's possible to live a very long time with an illness for which there is no cure. It's hard to find an understanding doctor who is equipped to manage the care of a patient with a chronic illness. So if you feel that you and your doctor are not communicating, it might be time to look at developing a relationship with another doctor.

As for family and friends, sometimes it helps to relate how you feel to something they can understand from their own lives. For instance, you might say something like, "Do you remember how you felt when you had that really bad case of flu (or pneumonia or whatever) last year? How bad you felt and how hard it was to do anything? Well, that's kind of how I feel all the time. And I try to deal with it, but there are times when it's really hard. And I really want to talk to you about it...." Then that gives you the opening to talk about the things you think they just don't "get", in a way maybe they can understand. Soometimes it doesn't do any good., but just letting people know how you feel can go a long way towards reducing some of the stress.

I hope things begin to improve for you soon.

angela
04-22-2007, 05:30 PM
i can TOTALLY understand you, as i'm sure all of us here do! it's very hard, an dyou feel all alone. wondering yourself if you are crazy. we know dear. have you heard of the spoon theory? (google it) it's a great explanation of 'a day in the life' for us lupies, and lupie likes :wink: , and a good place to start for people who dont' have a clue!

it will get better, hang in there! (argh!! i should take my own advice! :lol: )

be well :wink:

mnjodette
04-24-2007, 06:29 AM
I find the hardest part of living with a chronic illness is NOT making it the focus of my whole life. I'm sure that sometimes people think I focus too much on it - and I really try hard NOT to do that. But, let's face it - it becomes something you have to focus on a lot just to manage it well. That tends to turn me inward more than is probably healthy for me, or for my relationships.

So, I'm working hard to find a balance: I focus on those things that I must manage about my illness, but I try to turn my focus outward - on other people, things happening around me, the weather, anything - more than inward when I can. I'm guessing it'll make me a little easier to be around. :) And then maybe people will be more understanding when I DO talk about what's happening with me.

angela
04-24-2007, 11:49 PM
YES! mnjodette!

IloveHistory
04-25-2007, 12:24 AM
Hi Mnjodette!

I totally agree with you! That is definitely the hardest part!

Keep well! :)

TERIOD
04-30-2007, 07:54 AM
My name is Terry,
I understand the lack of understanding :D with that said, what are some of tricks or tips in communicating the way we feel to the doctors, some times i feel like they think im faking or just plain not listening to what im trying to convey to them.

another thing i get when they do listen, is there rationalizing everything(for instance my joints pobally hurt from lack of protien) yes its the answer but the problem doesnt get fixed, is this because the cant or dont have an answer???

being a guy i was born with a lack of communication and to run up against this also is very frustrating sometimes, My wife does her very best to try and understand but other than that its like beating my head agianst a post

ya'll have the best day possible and thanks for listening

Saysusie
04-30-2007, 08:50 AM
Hi Terry;
I find that the best way to get my doctors to listen to me and to take me seriously is to go to them armed with information and education about my disease (Lupus), its symptoms, medication, treatments and the other illnesses that I have because of it (i.e. - Fibromyalgia, Raynaud's etc.)
I learn as much as I can, keep a log of my symptoms and when they occur and what I've done prior to the onset of symptoms. I then take this log with me (along with questions that I insist that they answer or at least agree to look into for me) to each appointment. Then, and to me most important, I stand my ground with them and let them know that I am an intelligent person who has a disease and I will not let them dismiss me, my symptoms or tell me that it is all in my head!
I guess what I'm saying is that I find it is best to be very pro-active in my care and bery firm with my doctors.
Perhaps someone will have some more suggestions for you!

Best Of Luck
Saysusie