posted
Giving support, what ever kind of support it be, to those around us who are in need is no piece of cake. Those put in such a position for extended periods of time also need understanding and appreciation. And they are also running into disinformation from supposedly ...'credible'.... sources. That is why these 'sources' are such criminals! As far as letting go, it's totally necessary. Otherwise and eternal karmic cycle of misery continues indefinately! Lets help each other thru all this, so that "the karmic buck stops here"! Suffering indeed sucks, but it is unavoidable, Every effort any of us make to understand the suffering of another will inevitably come back to us bigtime-- even hastening our return to health in a very real way. When we can't think of what to say, think of some way to say, or act out, "I love you".
I appreciate all you folks-- even if you weren't here, a few years back, to help me through my blackest, most cynical, moments! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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bettyg
Unregistered
posted
hey dave, can you edit and break up that long, solid block of text so folks like me can comprehend it? i'm sure you have some good comments; i just can't weed them out. thanks my friend.
ks mom, did you recently get my newbies links/advise of 50 pages plus?
in there i have some excellent examples that were posted here in general support:
lymedad's letter to family/friends
DAR'S "TOY" STORY posted this past month
if you didn't get this since i was off 1 mo. for hip surgery, send me a private message, 2 people standingtogether, i'll send it to you. there are other things there too.
you've got to AVOID NEGATIVE FAMILY MEMBERS; you'll be happier! unless you live with them!!
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Lymedad's letter was great, but something they would not understand.
Dar's story is how we feel alot of the times. Not something I could send them, they want proof, an actual factual before they would 'get it' about just how sick we are.
Dave, In all fairness, maybe I should explain more.
If it were just me and husband, I could live without their 'support'. I could honestly care less how they view me or our illness.
However, where it concerns our son...
How do you explain to a 10 yr. old why Grandma and Grandpa will send B-day cards, Christmas stuff,
ask Dad how his back/weight/BO are, but never ask how he is doing?
We get prayer requests for other family members but we are never included in that for what we have gone through. [except husband's back]
It drives me nuts and really hurts that when I needed their support when son nearly died in my arms.....not even a phone call to see how he was.
Nothing. No one else in the family was told. [we have a 'grapevine' system in our family...you tell the parents and word gets spread]
But yet....if anyone goes through stuff, son is expected to send a get well card, etc.
Ahhh, but since the Lyme test came back negative, we don't have to worry about that and since son didn't have a TEST to confirm arthritis...
well, you get the point.
sorry, I know this is probably whiny, etc.
When we thought it was EI, we got laughed at..."oh, you have tree hugger's disease"
I came unglued and unleashed on them.
I sent info on Lyme as soon as we found out..
Back to unless its an actual factual....
I give up!!
I can't make them understand, I know that. But just even acknowledging that son is having a bad day would be a start.
Is it too much to ask them to at least offer sympathy to him when he tells them he is in alot of pain that day?? [whether or not they believe him]
posted
I have to say, I had to distance myself from some of my family. If they don't believe your son, then how can they say they love him? It just doesn't add up.
I belong to a group and there are two of us suffering terribly from Lyme. I get prayer requests all the time for people who are "really" sick. I've signed get-well cards for people who are "really" sick. It hurts ... they don't mean it, they just don't get it.
I don't really have an answer ... I'm sure you've shared your feelings with them. If not, you should.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My answer is the wrong answer in a general, healing sense... but
I don't forgive, I don't 'let go'. I don't associate with people like that anymore because I have no room for people who are negative. Especially, the longer you're sick and the more that doctors can't figure out what is wrong with you(prior to Lyme testing--after sick, mold building for me), the more 'positiveness' you need around you.
Ridicule only brings you down. It doesn't benefit you in your recovery.
Also remember that beating sick ones down is partially a natural human behavior. Although it's normal to have compassion, you also always want to be the 'top person'. Those who ridicule sick people find that this is the only way they can achieve this(much like being angry and kicking the dog).
People who are truely strong and 'sure of themselves' do not need to beat others down to make themselves feel better, in fact they usually do charity work and attempt to bring others 'up'.
The best book that I've found to read(from a non-religious aspect) when going through these things, is to read "Meditations" by Marcus Aurelius(skip the first couple of chapters).
Of course, I know this is easier said than done, because I have lost all of my friends that I've known since childhood.
Stay positive, and I wish you the best.---remember that life and love is about finding the beauty in imperfections ~ me
-------------------- Never walk through a cornfield backwards.
So here's my take on this one; pray for those who don't understand. While you're praying and while they are in denial, don't depend on them for your support or for your son's support.
We've (myself, wife and daughter) have become our own support group. We love our extended family, but we don't depend on them for our daughter's mental well-being.
She doesn't understand people, why they can't be more empathetic toward her illness. I know that one day they will be the ones who will have missed out on her love, once she's recovered from this illness.
Again, all I can say is pray for them. It's terrible to say but I don't think the general public will ever understand the suffering of Lyme patients until someone famous dies from it (Rock Hudson - AIDS), etc.
It's going to have to become fashionable before we'll get the help we need to fight this battle, before we get the research dollars, the health insurance money or the doctor's understanding.
Try to keep the faith. You're all that stands between your child and the rest of the world, he needs you more than anyone else.
Okay, another addition to the prayer list!!
Dad
Posts: 681 | From California | Registered: Oct 2005
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posted
So many good, spiritual things were said here...
I have been tired all of my life and as a teenager I would sleep the weekends away. I wasn't depressed or lazy, I had Lyme and didn't know it.
I felt like doing nothing and my parents hated it. I also came from a family where you wouldn't get sick unless you wanted to get sick! If I got a cold I "wasnt' thinking positively." I was a KID!!
In the last 5 years or so I've been dizzy, out of breath, and have had the classic Lyme symptoms, and growing up on Long Island I thought it was time to get the Lyme test. My mother has basically blown me off every time I have said, "I feel sick." She never asked why, or even really acknowledged the statement.
I felt weak being sick growing up in the family I grew up in, which is why I ignored my Lyme symptoms for so long.
Growing up I didn't get rewarded for being sick, but for being "strong" and active--another reason it would really hurt me that my parents didn't believe me--it was never my nature to even complain, so if I'm actually complaining, wouldn't that alarm them enough to listen??
Only until I felt so horrible that I wondered if I was dying did I start narrowing things down.
My mother NOW has admitted I have something wrong, because she can SEE Babesia in my labwork. Though I'm happy that she finally believes me, I sometimes get angry thinking that she should have just believed me, since I don't lie or exaggerate. Why did she need to actually SEE something? Where was her faith in me?
Also, there's more to this dysfunction...My father has Lyme and has had it for a while. I started to see that I have the same symptoms as he does; in fact he has even more of the Lyme symptoms.
When I got diagnosed I told him I KNEW he had Lyme, and he should start getting treatment. I know what he's going through! But, he refuses, saying that he has to die of something, he'll just die young. How morbid! But it made me realize...there are people who just deny things in general, even when it's happening to THEM!
But, a lot of people are making excellent points here. I think sometimes our family denies what's going on because it's too painful to admit that their child has something wrong with them. In my case, my mother was never very strong in some ways. If it bothered her or upset her, it didn't exist.
Some people really can't handle things..where I'm more of a "If it needs to be addressed let's face it head-on" person. Many people would rather live in denial than face something "painful" to them.
Also in my mother's case, since she takes everything personally, I think she feels my Lyme is somehow her fault for not finding the tick on me during our constant tick checks.
I haven't totally figured out what my father's issue is, but sometimes he can make me feel guilty for getting treatment while he suffers in silence. Then I realize, I can't allow him to make me feel that way.
The bottom line is, people deny things because of a weakness in THEM, a certain perspective they have...it affects us and hurts us, but it isn't even really ABOUT us.
We are already suffering so much from a disease, and we will only suffer more and impede our progress if we give energy to thinking about why others may not be strong enough to admit we're sick.
I've never been religious and can count the number of times I've been in a church on my hand, but I've always been spiritual and even more spiritual since dealing with Lyme.
I believe everything happens to help us grow and learn, and maybe it is our "role" to have Lyme and find some inner strength, while also teaching others how to face some things about themselves.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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