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» LymeNet Flash » Questions and Discussion » General Support » when your family thinks you are INSANE

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Author Topic: when your family thinks you are INSANE
justag
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After rounds of doctor's visits (not LL) and no real diagnoses, you still insist going further to take more tests (like Igenex), and then your family thinks you are just making all this up and become obsessive and insane!

When this happens, what holds you on? Financial burden, physical illness, mental torture and misunderstanding from family members, especially the one that's so important to you....

What will you do?

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improver
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For me it is God and my wife. The rest of my family thinks its anxiety that is making me ill. Oh you worry too much and that is making you sick, they say......

I did keep pushing for more tests, and finally went to a llmd after 2 years of no dx and tested pos through igenex for ld.

Another thing that helps is to come to this site and read everyday, you then see others going through the same thing.

Good luck, Rich

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clairenotes
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I was told that my illness was in my imagination by a relative. I would think, why would someone who was living a full life before becoming ill, make something like this up? My story gets even more bizarre and complicated. But I simply want to say this...

No one else can enter your body. Only you know what feels normal and what does not feel normal.
Believe in yourself and what you know to be true. And then take appropriate action.

Claire [group hug]

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Beverly
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Yeah, I know how that goes, for years I was the family nutcase.

Even doctors in the ER told my hubby I was a little nuts. It's funny how doctors/people can make fun of a person with anxiety, but they would not dare make fun of a person in a wheelchair.

The only thing that has really gotten me through it was my faith in God. Somewhere deep inside I knew something was wrong with me, but I didn't know then I had lyme babesia and mycoplasma.

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Kendrick
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Don't try to make sense of anything. My friends are the same way. My family is not as bad because my mother has fibro.

Never try to talk sense into a fool.

And many people have strong opinions on things they don't know about. It a defensive mechanism to not look stupid. You'll find this especially when someone is ignorant about something in their field(medicine).

I have a few doctors who are understanding and a few who aren't.

--------------------
Never walk through a cornfield backwards.

About me(Yahoo): http://360.yahoo.com/profile-NR1Y8cw6fqhtrewwItSlfsgQDIhaOojd

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yourtroubl
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I know how you feel. You almsot just tell yourself that oh well I just woke up one day and decided to hurt all over and take to watching tv all the time.

Yep, just thow pooping in pants for a little extra show; lol.

I am so frustrated. With Life period.

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KKYOUNG
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It is very discouraging. My family knows how outgoing I have always been and that when I come home from work and go to bed - there is something wrong and its not just that I am crazy. But I know they have to wonder since I haven't gotten a positive test and here in Indiana there are no lyme doctors to go to. I at least have a spot on my leg to show Im not totally nuts - whatever it is - this is where it started. Ive only been this way since May and I am already so tired of the stabbing pains, the aches and feeling like I have been run over by a truck - my heart goes out these people on here who have had it for years...I just keep praying that I do not have to endure it that long. Good luck to you, just know you are not alone - and all of us on here that are dealing with it do understand even when outsiders can't possibly.
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5dana8
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Hi Justag

I am so sorry your family doesn't understand [Frown]

After 20 years of lyme much of my family doesn't get it either & many of my friends that are well don't get it either.

It can feel isolating at times . Being here on lymenet is so important to me because sometimes unless you live it regular people can't begin to understand it.

People here live it & do understand this disease & all it take takes to make it threw it

so stay close in touch here. We do understand.

You are not alone.

Have you found a LLMD yet? If not please psot a post of what state you are in & maybe someone can give you a pm about some LLMD near you.

hang in there [kiss]
Hugs & healing [group hug]

Dana

--------------------
5dana8

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Lymetoo
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quote:
Originally posted by Kendrick:
Never try to talk sense into a fool.

So true. Save your breath!

KKYOUNG...are you being treated???

--------------------
--Lymetutu--
Opinions, not medical advice!

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bettyg
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[QUOTE]Originally posted by justag:

When this happens, what holds you on? Financial burden, physical illness, mental torture and misunderstanding from family members, especially the one that's so important to you....[/ QUOTE]

sometimes when it is your spouse or significant other, you need to stay away from them since they are generating so much NEGATIVITY! you tell them, do not discuss this with me as it will cause additional friction and comments that neigher of us can take back once said.

yes, lymenet is YOUR lifeline; we are walking in your shoes, and offer much personal advise of what has worked/NOT worked!

my sister commented to my husband shortly before her death from advanced bresat cancer in liver, "the family thinks it's all in HER HEAD"!

ANYONE suffering like her from the 24/7 pain, should have understood and been supportive. i never knew of this comment until months and year down the road.

i stay away from my family of 3 bro. siblings left. went to xmas last year after 3 yrs; not changed at all.

be around POSITIVE, SUPPORTIVE folks only. [Wink]

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sixgoofykids
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Sadly, I have to stay away from my mom and sisters. Not only are they unsupportive, but they're also just plain RUDE! I've never seen them treat strangers as badly as they treat me. I just stay away.

KKYoung, I hope you're getting treated. I live in Ohio and fly to NY for treatment. I believe I've heard that there's also an LLMD in Missouri ... someone here might be able to verify that. I used to live in Bloomington, and St. Louis isn't that long of a drive from there ... only three or four hours.

--------------------
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panicbegone
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My cousin says im a hypochondriac (she's a lucky girl who use to do drugs, drinks beer like a fish, smokes like a chimney and is healthy and energetic). She told me i need to go get some Self-help books.

My uncle says (regarding my cfs diagnosis), "HAHAHA...I must have that too cause im tired!"

My ******* of an uncle looked at my Living with Lyme book and crossed off the Ly in lyme and told me I have an ALL ABOUT ME disease and that i just want attention.

I think we all get this kinda crap...even if they dont have the nerve to say it. Sometimes i dont blame them cause i am barely understanding this disease..how can i expect others to. I mean most of our own doctors dont even believe us.

I hold on for my kids.

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lpkayak
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this is one of the hardest things. i have lost friends too.

use this site and find local support groups for support

educate yourself...trust yourself...take care of you

--------------------
Lyme? Its complicated. Educate yourself.

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LisaS
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This may sound silly, but when I feel the rest of the world is against me, I crawl into bed with my two little doggies.

They will always cuddle with me with no judgement or anything other thatn unconditional love!!

Also I notice when I'm really sick my one dog, Oliver won't leave my side. I'm convinced he can sense it.

IN fact this might sound weird but one time I was crying and Oliver licked my face and all I could think was, is there Lyme in tears? Could he get it that way. Scared me to death!

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https://www.facebook.com/profile.php?id=1660435643

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radiogirl
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Someday they will be old and sick.....you can tell them you pray they will recieve the help and understanding in their time of need they are denying you in yours.In the mean time we here understand and seek out quality people that have heart and soul.Take Care...RG
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Mo
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as aweful as this kind of treatment is..
it really is. [i would guess if a friend or family member came to you and said they had purple-hairy spot disease, you would support them]

..in any event it is you who are responsible for your own health and welfare [and that of those you are responsible for, if you have children].

at the end of the day, anyone who is NOT supportive is a drain at a time you cannot afford to be drained in any way.

make a statement as to your priorities and disassociate with anyone who is not supporting
your quest for answers and appriopriate evaluations and care.

let them know this, let them know why [you owe that to yourself] and be prepared to immediately move on.

tell them you simply cannot afford the energy it takes to lobby for their support.

as you move on, those who are true to you will support you, because they will understand this from you, even if they do not understand your health condition.

those who do not will likely be nothing less than a drain on you at best over time - and you cannot allow others to effect you in this way.

be strong, state your focus and follow through.

really, you need/deserve/require nothing less than full support right now.

people reserve the right to act like a$$holes at times, and they will excersise that right..

you have to let them have that, just don't let that steal anything from you right now.

mo

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lymedad
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Justag,

Okay so you've touched upon one of those sore subjects. I'm a parent of a young lady who has suffered from the effects of Lyme for over 6 years now.

I've heard every possible input from family members;

She's just lazy - It's all in her head - She doesn't look sick - It's those pills she takes that makes her weird - You need to be more strict with her etc. etc. etc.

I have grown extremely tired of members of our family and so-called friends judging her condition. I have finally slammed the hammer down on this subject.

I've told everyone in our extended family and anyone else who wants to listen;

If you can't find it in your heart to accept the fact that my daughter is very ill or if you think you need to offer advice to her or us

STAY OUT OF OUR LIVES !!!

As you can imagine I'm not the most popular person in the family, but quite frankly I just don't have the time or energy to worry about how others feel.

So here's my fatherly advice; you need to concentrate on only one thing at this point in your life - your health.

Anything that detracts from your attempts to get a handle on this disease, you need to erase from you mind and your life.

If they truly love you they'll come to their senses, but hey if they don't at least you'll know who really cares and who doesn't.

I've now slowly climbing down from my soapbox and I will sign off for now, I'm out of breath (I'm really old or at least I feel like it and I'm not the one who is sick).

Be well and be strong - I made a sign for my daughter's bedroom, use it if you like,

quote:
"The Will of God will never take you, where the Grace of God won't protect you".
LymeDad
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lymedad
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Mo,

So we say almost the same thing, at almost the same time.

You said it in Yankee talk and I said it in Hillbilly talk, but it all comes out the same,

"if you don't want to help, stay away".

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Mo
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yea, what he said...

lymedad just said what i was trying to say.

mo

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Mo
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oops, we just did it again..

(i ought to shave my head like brittany)

[Big Grin] mo

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bettyg
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lymedad and mo; good job you 2 !!

dad, i love the sign you made for your precious daughter, and you put your extended family in their place! [group hug] [kiss] [group hug]

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sizzled
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I often wonder why people choose to be hurtful when they can't be helpful? Are they frustrated?

The world was flat once too! [bonk]

Yes, this can be a truly lonely disease.

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Marnie
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Simply respond, "I know my own body and I know something is very wrong."

Years ago, a man named Don, authored a website on lyme called Cassia.

Here is the reason why he chose that name for his website:

"Information about the organization name, Cassia:
The organization name, Cassia, has this origin: Cassia is a plant of Biblical reference (Exodus 30:24, Psalm 45:8, and Ezekiel 27:19) -- one of the ingredients of anointing oil.

It is historically known to be a plant who's fragrance is released through it's crushing.

As a type, it symbolizes any life that releases a sweet fragrance through it's crushings -- otherwise spoken of as life's adversities.

As one example, in other words,

if my adversity and experience of Lyme serves to cause a releasing of information that helps any number of others,

then the net effect of this "crushing" has been the release of a sweet fragrance of benefit for the lives of others.

In a broader and Biblical sense, Cassia, in it's use, represents the Messiah (or Christ), my Lord; whose life was clearly spoken of long beforehand to be crushed entirely for the sake of mankind."

http://cassia.org/author.htm

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Cobweb
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"Never try to talk sense into a fool." I don't get it. [Frown]
I'm not a fool, but I do have lyme, and I can't make sense out of this statement. Do you mean , like, pour milk into an upside down glass? or change a leopards spots? ( do leopards have spots?)or you can't turn a pickle back into a cucumber?
One simple sentence-and I can't process it. [Razz]

Anyway-I relate to this topic so much-that I have chosen to live alone-I didn't think I would ever make headway with this disease in a home where my family sees me as "crazy and lazy".

I told them I haven't given up on myself-but the next time they put me down I'll just shake my head and say "Guess I'll stop trying to talk sense into a fool" Sounds good-maybe they'll understand it. [Smile]
Carol

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Geneal
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In my family, I've been dubbed the hypochondriac (sp?)!

However, as my little sister said to me "You always manage to pull a disease or disorder that fits your symptoms".

I have to admit that before having Lyme, I had NO idea how sick or how all encompassing this disease can be.

I knew it was a tick born vector....but really nothing else.

Boy have my eyes been opened.

I don't think people can relate to how Lyme makes you feel. I thought I was dying and my family told me that it was my attitude.

Yeah, okay. Let's see. Can't talk, can't swallow, can't breathe, can't walk straight, can't think, can't remember

hurt all over, running fever, massive headaches, etc, etc, etc.

I don't expect my family to understand.....they don't seem to want to (except my Mom who is an Angel).

They don't even ask how I feel anymore. Sometimes that makes me sad.

I guess since being dx with Lyme, I can honestly say who are my friends.

Other than my Mom and my neighbor, who has Lyme also, the only other real friends I have are on this board.

Thank you all for being my friend.

Seperate the negative ones out (they still manage to get through every once in a while).

Surround yourself with the positive.

For me this has been a life changing experience, both spiritually, physically and emotionally.

I just wish my family would have taken enough interest to even look Lyme up on the internet.

Hang in there. Here, you are never alone.

Geneal

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clairenotes
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Sizzled wonders:

"I often wonder why people choose to be hurtful when they can't be helpful? Are they frustrated?"

What I noticed when I was extremely ill is that it was the people who had a lot of their own internal negativities or low self-esteem that made the most hurtful comments. And somehow, it was as if my predicament made some of them feel better about themselves (by comparison?). What can anyone do with that?! Pretty horrid.

Sometimes we do have to separate. It is the worst thing to come to, especially if it is a close family member. But it is about self-preservation. We are already weak and vulnerable, and in this state I think we are even more susceptible to the energies of those around us. We need to set some boundaries (sometimes) and we DO NEED to be around positive influences.

Facing a dilemna now, with someone in my life 'getting on in their years' who seems 'upset' that I never come to visit. Trying to see if I can summon up enough strength to forgive and visit. Forgiveness -- another dilemna to overcome.

Claire

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HaplyCarlessdave
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people are so easily mislead by ...'doctors'...(yeah, :PUKE RIGHT), that mis-diagnose and deny! And there's all this "built-in" respect for these ducks that causes people close to you not to trust you; not to believe what you're saying.

Look upon it as an illness; but remember, since the typical denial is almost assured, you'll probably have to keep that to yourself... Consider yourself very lucky, for their illness is even harder to cure than "Lyme etc".!

DaveS

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clairenotes
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Another good thought, Dave. Judgmental behavior sometimes does seem like an illness that is 'more difficult to cure than Lyme.' It is the main underlying theme of a fiction book I have been trying to write for the longest time (a subject that has preoccupied me since I was little). Not sure if it will ever be completed though. But great therapy at least!

Claire

[ 22. February 2007, 01:47 PM: Message edited by: clairenotes ]

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yourtroubl
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You know I must say I have had a different reaction. I know my husband and kids are tired of me being tired, but my friends, neighbors and family think I have just this awful disease and they cant believe I am not being treated immediately.

My mom said "they are going to wait until your joints are deteriorated if they dont do something".

It is strange because if you get a diagnosis of Cancer then immediately they start doing something but with this they start by trying to say well all the test must be wrong.

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Lymetoo
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quote:
Originally posted by Cobweb:
"Never try to talk sense into a fool." I don't get it. [Frown]

In other words, we can't convince stupid people that we are sick.... they are too stupid to figure it out.

How's that? [Big Grin]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Nebula2005
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Even when you THINK they've gotten it, when you're sick of defending the thing that has taken your life away from you--

One of them will say:

"you need to just get away from it all for a while"

To where???? I've stopped praying for death because it hasn't worked.

I ask God why and he (she) says "you just have to pull it out, Lynne, and that's all."

It is my own inner strength that gets me through. It keeps me isolated from the rest of the world (except you guys) but it's what I have left after I've explained, and complained, and then abstained.

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chroniccosmic
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Yep, this is a sore subject. One that I am still learning.

Get this, I have a brother in law who is an MD. Not once over the last 5 years that I have been sick has he asked how I'm doing. We see each other only at family gatherings and I refuse to let them get under my skin.

When he has gatherings at his house, sometimes his MD friends attend and not one of them have ever asked how I'm doing. Several occasions I've started to feel bad and my husband would help me leave, it is very obvious that my health isn't good.

I don't get it. I do know that it has changed how I treat the sick and elderly now. It has made me extra sensitive to their needs.

[Eek!]

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lymeladyinNY
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I have a niece who is a physician's assistant in an ER. She learned I take valium and oxycontin to ease muscle spasms and pain and told other family members I must be a drug addict and that all my symptoms are from being on drugs. I only take these drugs on rare occasions as needed. I'm certainly not addicted!

I had a 40th birthday party the other day and I showed my niece my abdomen which is covered with circular rashes from recent borrelia nosode/levaquin treatment. She asked, "What's that? A drug reaction?" I tried to explain to her what had caused the rash and then I realized I was just wasting my breath.

It hurts that someone I grew up with and love deeply would think this of me.

I couldn't help clean up after the party because my legs gave out and I was exhausted. My brother walked by me in my chair and said, "How convenient!" He was joking but it still hurt.

I have totally distanced myself from my mother-in-law because she thinks I'm faking it and tells anyone who'll listen how I've ruined her son's life and how lazy I am. My sister-in-law won't speak to me.

My neighbors learned I have Lyme disease when I was taken away by ambulance a few times. Since then, they avoid me like the plague. It bothered me at first, but now I pretend they don't exist just to keep the hurt at bay. I try to tell myself that perhaps their lives are so busy that they feel afraid to get to know someone so needy.

I miss my deceased mother so much. She would have been on my side and put everyone to rights!

Thank God for my supportive husband and my beautiful kids. They keep me going!

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I want to be free

Posts: 1170 | From Endicott, NY | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
bettyg
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quoting lymeladyinny

I miss my deceased mother so much. She would have been on my side and put everyone to rights !

ll in ny, she IS for you and fighting your battles with you. every time your family has SHARP PAINS, how do you know it's NOT YOUR MOM giving it to them!! lol [lol]

yep, AVOID NEGATIVE FAMILY MEMBERS! it's THEIR loss; not yours is my philosophy. [Wink]

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chroniccosmic
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Lymelady---I'm so sorry that we all have to go through this. It does give me great comfort to hear kind words here though.

Betty--What a great thought! My mother is also deceased and would have been so much help. But I bet she is working for me just from a different place.

Posts: 460 | From Illinois | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
bubbear
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Geneal and LLady
Hang in there! I can empathize I was very out going with dozens of friends (or so I thought)I can now put that down to about three friends and alot of aquaintences...Thank God for Moms! They continue to give life long after our birth. I also have a fantastic other half who is better than a cross your heart in support. LOL... Love those... who Love you. You will draw strength from them and they will bring comfort to the pain in your heart....I pray these things for you.

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Hugz, Tugz and Health to you!
Greg/bubbear
http://centralfloridaresearch.com
Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino

Posts: 109 | From Central Florida | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
LindaJ
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Hi. I am new here. After reading soem of your posts about family & friends not accepting that you have problems from lyme.. all I can say is that they obviously do not understand unconditional love.

When someone puts conditions of whether or not they accept you whether you are well or not...speaks volumes about THEM as a human.

THe best yo can do is tel them this to their face & keep forgiving them if they do not understand.

I have encountered individuals like this.. my former boyfriend who was diagnosed with terminal liver cancer wanted me out of his house so he cold die at home.

I looked every where for an apartment but every one caused an allergic reaction to the renovations made.. Fumes from new carpet or fresh paint do not go away in a few days. It does not mater if soemthig is old or new. ANd I never know what I wil be allergic to on a daily basis.

So, I continue to live in my car. I have been thru several hurricanes & some heavy snow storms. I cn not turn the heat on since it beings inthe traffic exhaust or my car exhaust when parke.
I luckily wsa able to buy an Alpaca blanket about a foot longer than I am tall which i open up under me & ull it around me & tuck itin at night. THen I place the 40 degree rated sleeping bag on top of me & tuck that in oneither side..I am not able to get insice ti because whatever got in it in a lady's house from the old gas stove fumes & whatever else. it makes me nearly pass out after opening a one sne of it when in my car.

SO, I put a VOlv ski jacket over my feet & a thick fleece pullover jacket & found if I pull the long sleeves of each behind my legs it blocks the cold air from comin up thru the floor of the car which is not insulated.

I reclinte the front passengetr seat to sleep . I wear my double m=knit alpaca gloves which are not lined with anything. ANd I have a fleece scarf & stadium jacket with ome fiberfil in it. No hood.

TO keep my face from freezing or getting cold, I pull the alpaca blanket up over my head & tuck it in underneath.I have long thick hair so this helps some.

I take the carpeted floormat I am not allergic to & put it under my legs & open the top end of the seat to block the cold as well.

I can sleep great outside! I am warm enougth once I figured ow to keep my feetwarm. I wear regular walking shoes inside the car to drive & sleep at n ight.

SOme nights I can sleep til morning but usually i have to drive to the nearby 24 hour gas station & use their clean restroom. It has an electric hand dryer thatr comes in handy when my gloves are wet or feet or socks get wet.
After midnight t here is not a big problem with me encountering perfumed or fragranced people who use the restroom.

Of course every time I have to use the restroom at night I have to take off each item & place it aside inthe car & put it all back on the same way to keep warm. That takes about 15-20 minutes depending. SO far I have woken up in time & made it to the restroom.

One morning @8:30 a.m after an ice & sleet & snow storm the parkinglot was snow cone ice & I got stuck inthe lower lot, It took an hour for me to finally forward 7 reverse my +3,000 pound car up to the top

I park under a church open carport in severe weather & they have given me permission to do so. I had to pack the snow & ice to go forward inches at a time! THen I had to pusj thru the pile of snow the plow truck maded across the parking lot entry & the street..But I did it !

WHat I can tel you is this .. unless yo can accept this is the way it is for now,, the stress wil put you back further. There are days when I cay or have had it. but I made many good friends 7 thruout the day I encounter them or a new person who brightens thigs.

I try to help others even tho i live in my car. O akso joined a great church called Unity. THe y havea 24 hour toll foo line you can call for a spriritual lift. They have awesome prayers !
1-800-669-7729 THey will pray for you or anyone!

You could have them pray for the negative members of your family as well.

It all boils down to what your belief system is.. for any reason.. Whatever you feel negative about will balloon against YOU for holding it in your heart.

I lived under stressful people in a family I was adopted into as an only child.... nearly every day of my life & I finally realised that it pulled me down into it! They made me angey & I cried rivers of tears.

I don cry becaseu I have Lyme & the Brown recluse spider bite.

And I do nto hope a Dr. will cure me. Medications only make you poor in health & your pocketbook. The body was not designed to be adulterated with synthetic drugs.

If you wantt o pick up your carpet walk away form lyme.. you have to give your body the proper nutrition to help it heal. GEt organic foods for starters & cut table sugar & high fructose corn syrup surars for starters! I did !
I could be alot worse than this! But am holding my own ! YOU CAN TOO !

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n/a

Posts: 9 | From Penna | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
lymeladyinNY
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Yes, I believe that Mom is helping me from somewhere. I just feel it if you know what I mean!

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I want to be free

Posts: 1170 | From Endicott, NY | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
sick
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LisaS

I'm with you and jumping into to bed with my tiny doggies! The worse I feel the closer my two dachunds stay beside of me.They just snuggle so close you feeled loved.I go for days not talking to anyway other then them as my friends have all left me too. My two best friends are always one step behind me though.

They truly are your best friend aren't they. I got both of them out of bad homes and they just appreciate being sincerely loved like they deserve.

I use to think one day I would have money to help stray dogs then this stupid disease hit. I still have dreams of helping all the lonely hungry strays I can.

sick

Posts: 538 | From Iowa | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
   

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