Re: Getting Family Support

February 23, 2011

Hi Nesey and all,

I feel for everyone that has problems with their family understanding what

they go through every day. I started my road with Chiari when my kids were 2

and 5, now 23 and 26. My outside family has a difficult time understanding

the daily pain, why I need further surgery, or why I should still need pain

meds. My mother called me an addict because she saw a doctor on TV talking

about prescription abuse.

It is difficult to explain the why's. Here is a great site on invisible

disabilities. The " You look so good " disabilities. I hadn't been to the site

in a long time, but it is excellent, they have really added so much to it.

On the site you will find house cleaning hints, humor, but most of all

encouragement.

http://www.invisibledisabilities.org/educate/butyoulookgood/

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/

Hi my name is Nesey. I haven't been on the message boards in awhile. I was

officially diagnosed 4 years ago with CM 1. I haven't had any surgeries but

I am symptomatic. I have been dealing with the pain day by day as most of us

do.

I'm a single parent of two with constant support when it comes to raising my

children but when it comes to discussing chiari it is the subject that gets

glossed over. My mother went with me to the institute 4 years ago and saw

the extent of my pain and how many pills I was taken at that time. She was

concerned. But the only thing she took from that appointment was that I

could hold off on surgery nothing else. She doesn't want to hear anything

else.

All my friends do is look at me and say " I'm sorry. " I'm not looking for

pity either.

I've given them the books to read and tried to talk to them about what's

going on but I know when they look at me they don't see someone who is in

constant pain. I feel alone. But don't have time to wallow because of

raising my kids.

Nesey Armstrong

CM 1

February 23, 2011

Nessy,

I lived many years with the same family reaction, no from my husband and

children who had been very supportive, but from my family in law and my

brother and sisters. As Chiari, Tethered Cord and Syringomyelia started with

me at 3 years old and at that time (1965) nobody had a clue about it, then

they tagged me as hypochondriac and that¹s it. The more the sickness

advanced, the more symptoms I had the more hypochondriac I was. Then when I

was 45 I discovered at last that did had something with a name, a diagnose,

I had syringomyelia, but it took me 4 years to have the whole picture as

then a year later I discovered the other, I had Tethered Cord, and then 3

years after, this is last december I had Chiari.

One thing my family members had always done to me was changing the subject

while I was speaking about the many symptoms I had, and then they told

everybody to do the same, with the goal of finishing with my hyponchondriac

behavior, so when I started to speak about the symptoms then all of the

sudden they changed the subject, they ignore me completely. Worst of all

when they were sick I had to hear all their very little symptoms in

comparison with mine, many times crying as if it was the end of the world,

but I still did not have the chance to speak about my health problems. It

was very funny to see they compete with each other in terms of who has the

worst sickness!!! I always hear them and I never told them that for me

unless you have cancer or MS (multiple sclerosis) Chiari and SM are worst.

But none of them had neither of them. But yet I still was considered a

hypochondriac.

I learn many things about people:

1. Chiari is a disease for smart and knowledgeable people to understand,

this is: it is so complicated that just a few can understand it, so for the

rest of the people which are not very smart it is Chinese: you are speaking

in other language. In order to understand it you have to know about anatomy,

brain, functions and so on, and this is not known by many people.

2. Many people are so selfish they were not born to understand others, they

can just look themselves into the mirror which at the end is crowed with

many others but they still will see nobody else except themselves, they are

narcissist.

3. Many people does not like to hear about pain, they like to have fun all

the time, life is so hard for them that is better to have funny friends, to

cheer up, go to parties, drink and be happy!!

4. There are just a few who will be with you no matter what, usually some

family members or very good friends, but they are a few.

So if you look at the population in general you can classify each one of

your family members or friends in each one of these groups. So there are a

few smart people, many narcissists, and many selfish, but they could also be

selfish and narcissist at the same time, so this will left you with a very

few who can really understand you.

With my decompression surgery I wrote a letter to all of them, put all my

MRIs, explain them with marks which were my brain and spine defects from the

lumbar spine to the brain, added a doctor report I requested to him so they

understand that I did not invented this sickness that it was real and I was

having brain surgery, this was in January this year. It was a long letter,

but it worked, amazingly it worked, at least they understood it and many

change their posture and behavior with me, but this did not change their

personality traits, so smart people understood it and were at least more

sympathetic with me, selfish people went to visit me once or at list phone

me, and those who wanted to have fun all the time never appeared, but they

send their regards which was an advance for them.

This is for you to understand that just a few will be with you, that Chiari

is the must important variable that affects your relationships with others

but there still are other variables not related to the sickness that affect

them too. Many times we will think that we will not do what they are doing

to us, that we will be at least more sympathetic, perhaps we will be, but we

can not expect people to do the same as us, so what we need to do is invest

our time and resources in the very few who really understand us and not

loosing time with the rest of them as life will be in charge of teaching

them their lesson, everybody gets really sick once in a while.

At the very end I have also learned that I was alone facing this sickness

anyway because even though I had the support of my husband and children,

they can not understand everything and with time a chronic disease always

tires the must incredible people, so having a support group in the Internet

of face to face will help you a lot!!

So I hope this serves.

Mex

Date: Wed, 23 Feb 2011 03:24:32 +0000

To: < >

Subject: Getting Family Support