She has been on the 'if I meditate and get counselling,read Carolyne Myss, and all the other amazing people that have cured themselves miraculously',I will get better bandwagon.

I get so angry inside when she starts going on as I am spending almost my every waking moment working,thinking,reading,communicating on how to get getter.

It makes me feel like I am an absolute idiot.I said to her 'don't you think I want to get better?' I really liked all the canulas,pic lines,port a cath insertion and accessing etc etc over the last 2 years.

She thinks that being ignored in my childhood and anything else bad that happened then and since then is the reason that I am not getting better.

I feel so stressed about it.I can see what she is saying about the meditation being good but creating miracles is another thing.

I shall go to councelling and start being better with the meditation,it can't hurt and I hope somewhere down inside it is true .

Makes me so sad and I can't really explain,

She also has suicidal depression and used to have nightly episodes where she started with pain or anger and it welled up until she was in dispair and was out of her mind with pain and sounds..She was also violent to herself at times. Only medicine has helped to reduce this..She will not meditate or exercise, etc. It took some strong abx and psych meds.

Her older sister, that lives at home has often chalked it up to being spoiled and mean. And a way to get what she wants..If it were only that simple..She has seen the rages and been personally attacked once, but still thinks it is controllable..

I think we all would love for it to be controllable. It has ruined my daughter's life and future so can assure you that she,when cognizant, and the rest of us know it is a horrible mind altering, physically incapacitating disease. At times, her sister also realizes this..

I think part of it is that it would be the easy answer or way to get well..Basically the oldest just wants wellness for her sister..

I can relate to your dilemma. It's hard to respond lovingly to this kind of judgment when it's someone we care about. We have a large part of the family that has that same kind of an attitude. I try to remember that they just want the best for us, not always easy!

I also think that some of these attitudes can be dangerous to some of us getting the treatment we really need. IT IS NOT OUR FAULT THAT WE ARE SICK!!!!!!!!!!!

One thing I've done to make it a little easier on myself is have a few prepared answers and just throw them out nonchalantly:
"We're hanging in there!"
"We're doing what we feel is the best thing at this time."
"Thanks for sharing, we'll weigh what you've said in our future decisions."
"It sounds like what you are saying has great merit and it doesn't fit for us right now."

You can probably think of some better responses to fit your situation and personality. We are finding that after a while the pressure from some of these folks eases up.

It sounds like you are doing a super job!!!!! So hang in there, okey dokey?!!!

Healing thoughts......lightfoot

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C O L O R A D O * S U P P O R T * S Y S T E M
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If I were you unless her attitude changes I would try to stay away from her as much as possible until you are well. It is easy for her to feel the way she does - she isn't fighting lyme.

Take care...and no beating yourself up - you are doing the best you can...

Show your sister all these replies!

I can totally relate..

I have an aunt and cousins who believe that philosophy aswell. My cousin called me when I was my sickest with lyme,(pic line and all),and asked me what else was bothering me that I was not getting better....

It is very frustrating..but you know now they have "HAD" lyme..not that I would ever wish this on anyone. They are not as sick yet as most of us on this board are, but they are feeling it I believe.

I just think of what my mother always said when her kids said something not to kind or at all judegemental. "If you make fun of it it will happen to you"

I really live by that motto now.

The injured person is already down, so kick them to get them up. Ha. What an idea.

Sometimes people are secretly glad at the misfortunes of others. Sometimes people makes suggestions that are worthless but they mean well. Sometimes people have this weird idea that mind over matter really works and if you want it enough, you will get well.

No one truly knows Lyme, but another Lymie! And no one ever will unless they themselves experience it first hand....Just my 2 cents!

You just hang in there and do what YOU gotta do....it's your body and your health...pay no mind to those that 'Just don't understand'...they will be no help.

You certainly don't need to burn any extra energy trying to make them understand if they have a mind set already.

Family members can really hurt when they don't/can't understand, or don't believe you!

It's a hidden disabilty, and maybe one day they will become educated, until then you don't need them bringing you down.

It's ignorance, as it is all over the medical community, except for the few LLMD's that we find that will help us, and usually because they themselves (or a loved one of theirs) have it.

Take care and just put your efforts to yourself and focus on getting better

Take care of 'YOURSELF'!
-laserred-

Maybe your social worker sister isn't "dealing" with your disease well. Sounds like she is in "denial". Maybe she is wishing for a miracle.

I did have to have my husband read about others with lyme for him to start to understand.
http://www.lyme.org/faces/williamson.html

Hope this link helps and works.

Also make sure she is around when you are suffering at your worst. Have her take care of you one time. Or take you to your DR visit.

If she is not showing compasion you need to take a break from her. All her "positivity talks" are bring you down further.

Hope you are not offended. Family matters are tough.

I'm a firm believer that the belief you will be well is essential..

but what your sister is saying is entirely innapropriate and unsupportive.

if it were me

I would ask if she would say the same thing to someone with say.. tuberculosis, or leukemia, diabetes....

I'd say, I know you mean well but I really don't think you understand the complexities and debilitation of TBD's.

I'd give her the link to, or copy of..the LDsymptoms pdf from
lymeinfo.net (this pdf explains allot about Lyme in a very comprehensive/medical way and drives the message home on persistance and difficulty in treating)
I'd leave it that.. only if she wants to understand, this has very accurate information.

Then I'd say I need support right now, but please ..if you can't give it to me fully, then I need to be away from you so I can have the space I need to focus on getting well.

I just can't afford the energy it takes to debate or educate you on the severity of this disease on top of what it requires to overcome this illness.

I'd give a hug and leave it at that.

If she reads it, she'll know..and won't say this stuff anymore.

Mo

I like Lymied's answer but I'd tell your sister to pull her head out of somewhere besides the books.

Sue, it sounds like your sister is one of these individuals - they get so caught up in the jargon/theory du jour, that they lose sight of humanity and reality. Yoga is great and keeping positive thoughts very healthy, but beyond that, this poor woman is in psycho-land....I have a bit of disdain for the so called 'helping professionals'- most are quite ill themselves and are the worst ones to be counseling others.....

If you value family harmony, then limit the time spent with your sister. Restrict your conversations to 'neutral' territory, and if that is not possible, then tell her the two of you will not be able to chat. If you find your sister's behavior causing you stress and really effecting your health, then you may have to sever ties....that's a hard one, but sometimes necessary...