posted
That's what my own father just said to me. I can't believe it. I am just so sick and tired of this stuff, I don't know how much longer I can take it.
A month ago he was telling me how positive I am and how it's amazing that everything I've been through that I still have hope.
So, I had a rough day today and that is what my kind, loving (NOT!! ) father said to me.
Posts: 215 | From Student | Registered: Oct 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My Mom told me the same thing prior to diagnosis over 20 months ago.
She said if I just changed my attitude I would "feel" better.
I was so upset and hurt.
Yet today, my Mom is one of my best advocators.
She listens and tries to understand what I am going through.
She helps me out now when she can.
My Dad said he read about Lyme and it was just all so "confusing".
Ya' think? Try walking a day in my shoes.
I think sometimes a parent offers whatever they can.....good or bad.
Maybe the bottom line is that is how they cope with our illness.
If positive thinking was a cure I'd have gotten rid of this horrible disease a long time ago.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
My sister's only contribution to helping me through this was handing me a book about positive thinking and insisted it would work.
She also has said Lyme is too confusing. It hurts a lot when I can't count on close family to take the time to learn about what I'm going through. It would take too much time and trouble I guess!
At one time, my mother told me to snap out of it (before dx) and I kicked her out of my house.
After one duck visit that my husband attended my husband said "how many doctors have to tell you you're fine before you believe it?"
My mother and husband are very supportive now. My sister still can't be bothered w/the details but watches my daughter when I absolutely need her to like if I have an appointment but makes it obvious that I'm really putting her out.
You're not alone! It's a constant struggle. It's bad enough we have to go through this but I've always assumed that my family would be there for me in tough times no strings attached but I had to prove myself to doctors and get a diagnosis before my family would accept that I was really sick. Very very sad...
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
knshore, Well, most likely it is in your head and yes thinking positive would is a nice thought wouldn't it?!
But, until someone healthy walks in our shoes or open their minds to understanding Lyme they just won't get it.
If we said we had cancer, aides or even an autoimmune disease like lupis they would have more compassion.
Actually, just a few weeks ago my husband (in a caring way) said, I think you should go and speak with someone.
You are not the same person anymore and your view on yourself is so negative and you have never been like this.
Well, no crap! I am not able to be the same person right now. Everyday you wake up and wonder what new symptom is going to make you ill today.
I have lived with lyme for 29years and I finally got the diagnose I needed.
I truly didn't understand what hell I would be going through on the lyme protocol.
So if I didn't understand, how could our loved ones understand? Not only do we need to educate ourselves but we need in little bits and pieces to educate the ones closest to us. And that will take a lot of time before they can understand it.
It is hard to be positive when you feel so horrible. Our lives change and our thought process changes also. You are definately not alone with people not getting it!
Negative feelings are just as much of a part this as positive feelings are.
Just be true to yourself and to lyme and listen to your body. Our bodies tell us a new story everyday!
Posts: 101 | From NJ | Registered: Apr 2008
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posted
Before I was diagnosed with Lyme, one doctor told me (when my back/neck/arm problems had become so severe I had to abandon my nearly-completed PhD):
"There is nothing physiologically wrong with you - you need to think more positively"
"You should try meditation"
and my personal favorite: "You need to stop questioning the cause of your symptoms, I'm telling you, you won't find one and you'll only be dissappointed if you go down that road".
Anyhow, I feel your frustration. We're not crazy, those IDSA guidelines are! Great news today though - the 2006 IDSA pannel on Lyme have been exposed for their bias and their guidelines will be re-evaluated by a new committee - supervised by an unbiased "Ethics" doctor and the Connecticut Attorney General!
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Kristen,
I agree with what you said about being true to ourselves. We have enough to worry about w/out worrying about what everyone else thinks and if they understand.
If they wanted to understand they would make the effort on their own. I think from now on if someone wants to know something I'll tell them to look it up. I had to!!!
If they don't want to make the effort to understand and still judge us then they're just sapping us of precious energy if we keep trying to make them get it. That's their job!
I no longer have any close friends but who needs them since they obviously weren't GOOD friends anyway. I am my own best friend b/c I'm fighting for my life so I can be around to be a good mother to my beautiful 2 yr. old daughter.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
My dad told me to make sure I was "going overboard" when it came to monitoring my medication and diet. I almost cried.
Then I asked my mom - a constant source of support and strength - why he would say something like that. She had no idea.
But the next time I visited them, my dad asked how I was. It was a bad day and I explained that. He was understanding and told me about someone he knew a long time ago who had Lyme.
I agree that parents struggle with this, just like we do. My mom feels guilty she didn't insist doctors help me more over the years, when I was only mildly ill, on and off.
I tried to help her see that it's nobody's fault. That's all we can do.
Posts: 33 | From RI | Registered: Apr 2008
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Either people will stick by you or they won't, but it is not only their choice it is our's also.
Our goal is to get better to the point of having some of our life back.
I am getting to the point of not explaining lyme disease anymore.At first I felt I had to explain to everyone that there is a reason for me being the way I have been over the years. I have lived with being called a hyporchondriac since I was a little girl.
So people not understanding me is like second nature to me! lol I actually have had a few people apologize to me for being so hard on me.
I am finding the people with Lyme have such a depth and compassion to them and that is the only gift Lyme has given us. The rest is horrible!
Posts: 101 | From NJ | Registered: Apr 2008
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posted
knshore, When I said it is probably in your head I ment that is where lyme likes to make house, and keep the generations going. (so gross)
So like most of us it really is in our head.
Keep on being true to yourself!
Posts: 101 | From NJ | Registered: Apr 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I have a bit of a role reversal from yours. I'm the father and my kids are saying its in my head. Although, they don't feel as comfortable quite saying it like that, but it's pretty evident and very uncomfortable.
I really believe it is a society that conditions us. You get sick and you get better, and if you don't the doctor will give you a pill. In otherwords chronic illness is pretty hard to accept by my kids or your father or even myself before I got sick.
We just have to keep pushing the message this is not the case, formerly perfectly healthy people can become chronic and we need support to get better.
It's simply a matter of our voice. Every where I read in this forum is trying to put a voice to a disease we all share. A voice to an audience of our neighbors, friends and society so they can hear and offer aid. I really believe we'll get that voice. Blumenthals chastisement of the IDSA, movies advertising our plight, celebrities joining our ranks. We just need to continue pushing the message until it is perfectly clear.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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I just can't wait for EVERYONE to see "Under Our Skin"...... I think my husband and good friend got more out of it then me......
When the DVD is out....I will ask family and friends to watch it.....if they don't then they surely have no place in my life.....
I have really weeded out a lot of people that have been so uninterested in what I am going through family and friends....I just don't go that extra mile I used to for them....
I told my husband I would rather have one awsome friend then 10 ok friends....
Lymetoo I like your thoughts on fixing a broken leg with positive thinking....
If we all weren't thinking positive.... WE ALL WOULDN"T BE HERE!!!!
Jordan...one of the main lyme vicitms in the film UOS...started the film saying that if it weren't for his family (kids) he's not sure if he would still be here.... I thought that was really good coming from a "normal" looking man...
knshore.... did you ever read that post on the father writing about his daughter being ill and how he treated her.... hhhhmmm.....I know it was in with the newbie stuff.... anyone know?? that was a good read....
It is truly amazing how people are towards us.....and it's them that are giving us the negative thoughts
Well....I just want you all to know... that I believe ALL OF YOU!!!! we are in this together. mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
OK . . . anyone holding a rock in their hands right now, please don't throw it at me.
And this is only MY opinion . . .
Positive thinking and mediation were a big part of my healing. The meditation helped me immensely to deal with the pain. And positive thoughts are what forced my butt (and the rest of my body, for that matter) to finally crawl out of bed and start figuring out how I was going to deal with day to day living as a lymie.
I'm not saying that positive thinking is a cure all. And I know how very tough it is to feel positive when you feel like you have been hit by a bus. At times I was despondent, especially before my diagnosis.
But being miserable and negative and grumpy every day does not help either. And trying to be positive, in spite of the crappy hand that you were dealt, will not hurt you. So, I strongly recommend trying it.
I truly say this without judgement of how anyone chooses to deal with their lyme situation. But all I can say is that being positive allowed me to crawl out of my dark hole and see the sunshine again.
No sunshine for you, though, if you are on doxy.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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If we all weren't thinking positive.... WE ALL WOULDN"T BE HERE!!!!
I meant that we all DO think positive...we get up in the morning....and get on this website.....
I couldn't have gone through have the stuff I've been through over the years without seriouse meditation....and yes positive thinking..... .....and a huge one for me.....my faith... without that my life would not make any sence.... I'm still here for a reason and its up to me to get up every morning and figure it out....pain...no pain..
my husband asks how I do this everyday...all day....(he's in traffic alot)....I told him its like being in traffic...your stuck...no where to go....and you have a choice to sit there and be angry ...aniod...miserable.....or sit back put the tunes on...and relax and make the best of it....
thats what I do... ......and I'm doing a great job of it!! (how's that for positive thinking ) mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Well, Tree . . . let the good tunes roll! I'm with ya!
Ditto.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Agree with you tree and lou. I do meditation especially when I walk at lunch. People saying your not sick and its in your head is the problem. Positive thinking, forgiveness and self esteem are three very important ingredients to getting well.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
ooooooooo...yes good one Bob... forgiveness......that's a biggy too....
without that you would surely be grumpy and hatin' life...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I just started meditation with the help of my wonderful nurse/friend.
I have never been much of a spiritual person but mtree,Lou you are so right when you say you have to try and be positive.
Some of my friends just cannot understand how I can still be sick and how I am still taking abx.
My closest friend's husband told her "maybe its in her head!"
After I got my brain spect results I told her to tell him "YEP it is in my head-it is in MY BRAIN"
I try not to waste my time with anger towards people who just don't get it.
There are too many other emotions that I am dealing with right now.
A big one is acceptance.
I also feel so much love and caring from some family and friends so I concentrate on that....
That being said-I struggle every day in pain and fog and hope for the day where I can say I have been through h*** but I am back!!!!
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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Benjamin
Unregistered
posted
Hi Kn...its BJK (dont ask), have you seen a glass of water anywhere? (private joke)
I used to struggle with this, thinking it myself and hearing it from top specialists before I was diagnosed.
Thinking positive does help:
"Im positive that I have Lyme disease, and no matter what anyone says that is the cause of my symptoms"
I also believe its all im my head:
I have a brain SPECT scan to prove it. Due to Lyme I have lesions, white matter, poor blood flow, and inflamation in EVERY area of my brain, and in the words of the results....consitent with Lyme disease.
Im so sorry for you and I hope and pray you find encouragement soon,
kn - He really should not have said that to you and i understand why you are so hurt ... i would be too.
But from my expereince of having lyme since i was 10 I do think that it is particulary hard for parents to watch their kids suffer on and on with this disease and just feel so helpless they just want to fix us and they cant ...
I think sometimes their frustration comes out in a way that injures us even though that usually wasn't the intent.
I hope his attitude goes back to the previous supportive one he had.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I think I'm lucky because I haven't really been told that it's in my head by family -- only ducks.
My in-laws are very supportive and I think one major reason is because my husband's mom has Lupus and she was very sick with it at one point and had to be hospitalized. She still has lupus (as it's a lifelong thing), but I believe this has made her to be more understanding and caring of diseases that cannot be SEEN. And I'm really thankful for that. We can both understand each other in that respect.
My family is also very supportive. I don't know how much they understand the disease, but they try to understand it. It also doesn't help that they are way back in my hometown in KS, so I've only been able to talk to them over the phone and internet about how I feel and how my day's been, etc.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
It is fear that makes people say things like "It is all in your head."
It is the fear that . . . if you have lyme, it is possible that I could get lyme too. BUT, if it is all in your head . . . well I can't get that.
Parents want to be able to fix things, especially their sick children. They want to make things all better. And it is difficult for them when they can't do that.
I'm sure if your father knew how much his comment hurt you, that he would take it back.
I'm sorry that this happened to you.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Thank you so much for all your amazingly supportive and kind words.
I TOTALLY agree that thinking positively is a HUGE part of our healing process. But, having said that, I am positive most of the time...just happened to have a rough day. (Silly me, thinking I could call my dad for support! )
My only problem was him saying that everything that is "wrong" with me, is because I have brought it on myself...that I have created this life.
I don't understand why a perfectly healthy teenager would WANT to get sick with Lyme and have to drop out of school, etc.
Again, thanks for all the nice comments.
Sixgoofykids, LOL!!!!!!!!!!!!!
Posts: 215 | From Student | Registered: Oct 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
If a positive attitude was ALL it takes to get well, you'd be well right now!
I think people who care about us throw us the positive attitude thing when they are scared because they are out of answers. Even with doctors, if they are out of solutions, then they can get scared and throw it back on your head.
When people haven't been where we have been, sometimes the answers seem so simple. Do what I did, and you will get better. If only the positive attitude and faith would do it all.
You didn't have a bad day or a disappointment. You aren't just fighting a bad attitude. You got bitten by a tick, and you are fighting bacteria. Attitude helps the entire situation tremendously, but in my experience it is only mildly antibiotic.
But it is that positive attitude that keeps us moving forward, sticking to our protocol, and finding the answers that will work for each of us as individuals.
Good for you and your positive attitude!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Peacesoul
Unregistered
posted
The disease is not all in our heads, but 90% of healing is changing our attitudes.
When I stopped feeling sorry for myself and started to work on feeling positive, I started to get better.
The best way to get around what others say to hurt you is to just ignore it.
I'm now working with a natural dr on my lyme and my attitude is a large part of my recovery.
posted
I agree that a positive attitude helps; however, considering what we're going though I think it is normal to be sad or discouraged at times. The key is balance. Too much positivity is actually suppresion and leads to a build up of negativity.
Everyone but my husband initially thought I was just being a hypochondriac. If I talked about being sick they'd say things like "You'll be fine". After my diagnosis of LD almost everyone has come around.
Almost everyone. My mother and grandmother still insist that I am exaggerating my symptoms and I am just depressed and seeking attention. I am no longer talking to them because the stress was taking a toll on me.
It may seem extreme that I am not talking to family but they are really cruel. My grandmother laughed at me when I was crying from the pain and my mother says things to my husband like "I bet you miss having a wife".
I am not at all upset with the others in my life who didn't understand at first because all that matters is that they do now. I agree with Bejoy that when people haven't been where we are, the answers seem simple.
With people who continually deny our illness, I think it's important not to let them treat you with such disrespect. Demand respect and you might get it. Otherwise it may not be worth the trouble.
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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that is terrible what your mom and grandmother did.... I don't think not talking to them is bad.... your just taking care of yourself...if they bring on stress then that effects your health.
I too don't talk to many people...they wonder why...and I've told them....they lack understanding,compassion, and support to me.... and they still ask...why?
what could your husband say after a comment like that from your own mother.... not nice!!
we have to weed out the negative people to make room for the positive ones... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
"we have to weed out the negative people to make room for the positive ones..."
Absolutely Tree!!
Surround yourself with people that love and support you.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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