Re: EDS AND STUBBORN TEENS

[Guest guest]

Boy!!! Reading that letter sounds like my mom about 12 years ago about me. I was

SO stubborn! I just wanted to be NORMAL!! I might be some help for your 13 year

old daughter, I know what she is going through. When I was her age I did not

care about how bad I hurt, I just did not want the EDS to strip me of my

identety and who I am beyond the EDS. But if I listened to my mom I could of

save ALOT of the pain that I have now. E-mail me if you would like to talk.

littlekelli1976@... Thank you and God bless!

[Guest guest]

Well, said Barb! Sue Ginley

[Guest guest]

In my non-professional opinion, Sabra is going through a part of the

acceptance process. She is frustrated by the diagnosis and is probably

facing considerable harrassment at school. It's difficult enough to cope

with a new dx, but add in the barrage of teasing that all teens endure for

being " different " and it gets even more difficult.

I was diagnosed when I was 21. Part of the acceptance process for me

involved a period of depression. During that time I believed that my normal

life was over and that eventually I would be nothing but a pitiful person in

a wheelchair, unable to do anything for myself. It was an awful place to be

emotionally, but it was one I had to go through before I could eventually

grow to accept both my limitations and my abilities.

My advice would be to get her into counseling so she can talk about her

feelings. Don't pressure her to wear braces in class or do anything that

would make the EDS obvious to her classmates. She may not always choose to

do what you think is best for her physically, but she may need a little

denial to get her through emotionally right now. Give her some time to work

through her anger and denial about EDS so that she can eventually grow to

accept it and cope with it in a positive manner. If you force her to face

it before she's capable of absorbing it emotionally, you may push her away

and cause her to be less willing to look after herself.

-Barb

[Guest guest]

Barb and Kelli make excellent points! So this comes to mind:

The Seven Stages of Acceptance

Laverty

-------------------------------

Dealing with a chronic health problem can have a traumatic effect on an

individual and the family structure. The reaction to a diagnosis varies with

individuals. These reactions can be grouped into seven generalized

categories after a diagnosis is made. They are:

Why me?

Frustration or depression.

Hopelessness.

Impatience.

Fear or panic.

Over or under-reaction.

Acceptance.

The Initial Diagnosis

Most people are frustrated or depressed when they are waiting for a

diagnosis. This is often temporarily relieved when a diagnosis is made. Some

people experience a feeling of " euphoria " at this time because their illness

finally has a name. The problem is recognized and medical staff display

interest. This is usually short lived when it becomes apparent that there is

no immediate cure. When problems reoccur even in a minor form, pre-diagnosis

depression may return. The effect or impact may be worse at this time

because the diagnosis can't prevent a reoccurring illness from happening and

the impact this has on the individual or family. The patient is expected to

accept the diagnosis, its impact, and make changes at a time when one is

least able to cope. Time is often the only cure but families and individuals

should recognize that changes will occur with any illness of unknown

duration.

Recognition of the various stages will help the patient and family to deal

with the complex physical, psychological and social manifestations of the

situation. The order in which the stages are encountered will be different

with each person as well as the degree of impact. Professional help should

be sought in any situation which is beyond immediate control or exists for a

long period of time. It must be remembered that stages may occur at the same

time and that all or any one of the stages may reoccur. A reoccurrence is

generally less severe because you have already experienced it, and survived.

Family cooperation, support and understanding are essential to every success

story.

Why Me ?

What did I do to deserve this? How many times have you heard yourself say

this? This stage may appear as a period of depression or it may linger on

with unexplained bouts of crying.

Frustration And Depression

Constant minor problems that disappear and reappear often cause feelings to

fluctuate between " is this all in my head " , to the reality that the " minor "

problems are having a serious effect upon being able to function. There is a

sense on " losing control " of mental and physical functions when the patient

is unable to go out socially. Chronic fatigue may be a cause as well as an

effect of depression. Stress is complicated by efforts to perform all duties

and appear normal for fear of being labeled a " neurotic " or a

" hypochondriac " . top

Hopelessness

Inability to cope with daily tasks or mental confusion can have a

demoralizing effect. Feelings such as " why should I bother to try " occur

when something doesn't work the way it is supposed to. For example; fatigue

doesn't improve with sleep. By refusing to accept their limits and make

changes, the person may accept defeat and admit failure.

Impatience

Tolerance for accepting physical limitations of the actions of others may

increase or decrease; tempers may flare. During symptom-free periods a

person may feel an urgency to " catch up " on everything they haven't been

able to do and put things in order " in case something happens " .

Over-exertion required to do this will only complicate the health problems.

Fear and Panic

Fear of the unknown is a natural phenomenon that must be dealt with on an

individual basis. Fear may be exaggerated by the fact that the person is a

frequent user of medical or social services which carries a social stigma in

a society which values personal freedom and independence. Because so many

health problems or treatments do not guarantee normal functioning ability,

feelings of being a guinea pig may develop. Personal doubt about one's

mental and physical abilities can add to the fear that others can't possibly

believe or understand what you're going through. Fear can build and cause a

panic reaction. For example; a person who has suffered chest pains which are

not related to a heart attack may suddenly have chest pain that causes them

to panic and feel that " this is it " , that this time it must be a heart

attack. This stress can prolong the spasms, which increases the belief that

the heart is involved and it's being hidden from them.

Over or Under Reaction

The response to physical health or the interaction with others is constantly

subject to over or under-reaction which sometimes makes a person feel that

they are unstable. A person may refuse to help by hiding physical distress

and trying to perform " normally " or they may expect that everything be done

for them. Alienation may develop between family members because " body

language " and the spoken word may differ. Fear, needs or complaints may

either over or under emphasized.

Acceptance

This is the most difficult stage. Family and friends is based on the

interaction of personalities as well as personality changes, which

temporarily alter the individual. A patient having difficulty adjusting must

also come to terms with the adjustments, problems and fears of the family

members. Feelings of resentment, guilt, bewilderment or disbelief can affect

others as they are encountering the various stages from a different

perspective. For example; a person may de-emphasize physical complaints

because a family gives the illusion of disbelief or because they previously

over or under-reacted and became over-protective or depressed. Often,

problems are caused by family members trying to protect themselves as well

as the supposed feelings or reactions of others. How often have you said

" well, I can't do this or that because so and so will get upset " ?

How to Deal with the Stages

Patients experiencing these stages should write down the things that bother

them the most. They should keep a record of questions they want answers to

and then present them at the next medical appointment. This is an important

step which can relieve fears. Answers should be written down to avoid

confusion when relating information to the family.

Ask your family doctor to arrange an explanation period with family members.

Often a spouse only knows what is related by the patient, which may be

" slanted " in the retelling. Also, a spouse may feel " left out " or have

questions which would receive a more complete answer when it is known that

the family is co-operative.

Discuss problems and fears with family members and try to make decisions

which compromise. Try to consider how the others feel. Listen to what others

say because they may " see " a solution which you didn't or hadn't thought of.

The way you discuss a problem is very important. Avoid verbal abuse

questions or answers that begin with; " you always " , " you paid " , " don't

tell me " , " i don't care what " If you have a different opinion, than state

it honestly with an explanation. Tone of voice or body language will often

contradict the spoken word. Never resort to the techniques you use to start

or win an argument. If you do, you may win the battle but lose the war.

Remember that many problems are compounded when selfishness overrules

reason.

[Guest guest]

This has got to be one of the hardest stages in life for any teen with some

sort of an obvious physical challenge. Most kids I know who are going to be

entering high school soon are scared out of their mind, and even though they

already use a wheelchair or other aid, they fear rejection. For my kids who

don't use an aid, they don't even want to think of starting to use one. I

know I sure didn't when I was in high school! So, I kept most of my pain

hidden in any way that I could. Acceptance is everything and a mobility aid

certainly doesn't help in this process.

So! My suggestion would be this. Find someone that she can talk to who is

older and has a mobility issue. By older, I'm thinking someone around 19 or

20. This way, the person has gone through exactly what she is about to go

through and can help calm her fears. If you lived in Ontario I'd make an

effort to come out to meet you (who knows, maybe you do!).

This isn't necessarily something that you can help her through, just because

you're " Mom " and you don't know what it's like to be in high school these

days...hee hee hee... We encourage peer mentoring a great deal for this

very reason. Take it one step at a time. Encourage her to go to her OT

appointments - ask her if she'd like to bring a friend. This way, her

friends can understand more what is going on with her, and can show her

she'll still be accepted by other people even though she may have a brace.

Together they may make fun of what she's going to get, but it's part of the

process as well.

I've done this transition with kids a lot, so if you have any questions feel

free to e-mail me privately!

Good luck and you're both in my prayers. I know how hard this stage is.

Cheers,

>From: tatbet@...

>Reply-To: ceda

>To: ceda

>Subject: EDS AND STUBBORN TEENS

>Date: Mon, 26 Mar 2001 23:07:47 -0000

>

>I need some advice from anyone who has dealt with EDS and their

>teenager. Sabra was only recently diagnosed (last fall) and was happy

>at first to have a name for her problems. But lately, she's taken to

>making snide remarks about herself, calling herself a cripple and

>saying things like " that's what the kids at school think I am " . She

>doesn't want to take any pain med even though she is almost

>constantly having one ache or another.The only thing I can get her to

>take is a sleeping pill, because by that time she is too tired to

>argue. She has been referred to an occupational therapist but now she

>doesn't want to go there either. I must admit that I'm really getting

>angry about her reluctance to help herself because I have tried so

>hard to get her all the help she needs and now she won't accept it.

>She will be starting high school soon and will need some ambulatory

>assistance (scooter,wheelchair) to navigate such a huge school. The

>problem now is she doesn't want to appear " disabled " to new people

>she meets. I want her to work on maintaining joint function,and to be

>pain free if possible. I don't want her to get worse because she

>keeps trying to be like everyone else. What can I do to help her come

>to grips with his and accept herself and the help she's going to

>need? I am getting so frustrated with this and we've got a long way

>to go. She's only 13. Any advice would be appreciated.

>

_________________________________________________________________________

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[Guest guest]

EDS AND STUBBORN TEENS

> I need some advice from anyone who has dealt with EDS and their

> teenager. Sabra was only recently diagnosed (last fall) and was happy

> at first to have a name for her problems

My daughter is 12.5 years old if Sabra would like to correspond with

her. Email me off list and I will give you 's emai addy. She and I

were diagnosed 3 years ago when she was 9 so she's had 3 years to adjust to

it. She's been in a wheelchair 3 times so far, once in grade school and

twice in 6th and 7th grade for operations for a broken ankle (age 8) and

having a tumor operated on her foot twice in the past year.

Bonnie Heintskill

EDS Variant

Thiensville/Milwaukee WI

bheint@...

[Guest guest]

Hi! I too have a recently diagnosed 13 year old

daughter. She does the same things to a certain extent

and it does get frustrating. I just try to give her

the support and understanding that she needs to accept

and deal with all of the issues EDS is bringing to her

life. If it would help Sabra, maybe she would like to

talk to someone else her own age who is dealing with

it as well. still walks pretty well, but the

EDS is slowly taking its toll. We have never met

anyone else with EDS and she's feeling rather alone I

think. If she would like to email her, she uses my

address and she's more than welcome to email either of

us off list any time she likes.

--- tatbet@... wrote:

> I need some advice from anyone who has dealt with

> EDS and their

> teenager. Sabra was only recently diagnosed (last

> fall) and was happy

> at first to have a name for her problems. But

> lately, she's taken to

> making snide remarks about herself, calling herself

> a cripple and

> saying things like " that's what the kids at school

> think I am " . She

> doesn't want to take any pain med even though she is

> almost

> constantly having one ache or another.The only thing

> I can get her to

> take is a sleeping pill, because by that time she is

> too tired to

> argue. She has been referred to an occupational

> therapist but now she

> doesn't want to go there either. I must admit that

> I'm really getting

> angry about her reluctance to help herself because I

> have tried so

> hard to get her all the help she needs and now she

> won't accept it.

> She will be starting high school soon and will need

> some ambulatory

> assistance (scooter,wheelchair) to navigate such a

> huge school. The

> problem now is she doesn't want to appear " disabled "

> to new people

> she meets. I want her to work on maintaining joint

> function,and to be

> pain free if possible. I don't want her to get worse

> because she

> keeps trying to be like everyone else. What can I do

> to help her come

> to grips with his and accept herself and the help

> she's going to

> need? I am getting so frustrated with this and we've

> got a long way

> to go. She's only 13. Any advice would be

> appreciated.

>

>

>

[Guest guest]

I would like to talk with you,I have an 8 year old son with EDS.Trying to

get him to be still in a chore itself.He is always hurting himself,and I am

going threw an emotional time with all of this.Please,I need help and some

advice!!Thanks,Ruth Brunick

>From: littlekelli1976@...

>Reply-To: ceda

>To: <ceda >

>CC:

>Subject: Re: EDS AND STUBBORN TEENS

>Date: Mon, 26 Mar 2001 18:49:03 EST

>

>Boy!!! Reading that letter sounds like my mom about 12 years ago about me.

>I was SO stubborn! I just wanted to be NORMAL!! I might be some help for

>your 13 year old daughter, I know what she is going through. When I was her

>age I did not care about how bad I hurt, I just did not want the EDS to

>strip me of my identety and who I am beyond the EDS. But if I listened to

>my mom I could of save ALOT of the pain that I have now. E-mail me if you

>would like to talk. littlekelli1976@... Thank you and God bless!

_________________________________________________________________

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[Guest guest]

Hi Ruth!

I too was an overactive child who was always hurtng myself. My guess is that

you'll eventually get used to it as my parents did. (I'm 37 now) This is a tough

balancing act for you, you cant limit him too much or he rebels (I did), but at

the same time you need to be careful to let him particpate safely in the things

that an 8 yr old does. I have made countless trips to the emergency room, had

thousands (literally) of stitches sewn into my body, and never slowed down for

any of them to heal. I know if my poor mother had to do it over again, I would

always have had on long pants, long sleeve shirts, reinforced/padded knees and

elbows. If he is out banging around with the other kids he'll eventually learn

what hurts him and what doesnt, but knee pads, soccer shin gaurds, and the like

will provide him incredible protection in the mean time. Remind him that if

worn under his clothes the other kids won't even notice it, and he needs to be

careful!

Good luck!

B.

~~Ruth Brunick~~ wrote:

> I would like to talk with you,I have an 8 year old son with EDS.Trying to

> get him to be still in a chore itself.He is always hurting himself,and I am

> going threw an emotional time with all of this.Please,I need help and some

> advice!!Thanks,Ruth Brunick

>

> >From: littlekelli1976@...

> >Reply-To: ceda

> >To: <ceda >

> >CC:

> >Subject: Re: EDS AND STUBBORN TEENS

> >Date: Mon, 26 Mar 2001 18:49:03 EST

> >

> >Boy!!! Reading that letter sounds like my mom about 12 years ago about me.

> >I was SO stubborn! I just wanted to be NORMAL!! I might be some help for

> >your 13 year old daughter, I know what she is going through. When I was her

> >age I did not care about how bad I hurt, I just did not want the EDS to

> >strip me of my identety and who I am beyond the EDS. But if I listened to

> >my mom I could of save ALOT of the pain that I have now. E-mail me if you

> >would like to talk. littlekelli1976@... Thank you and God bless!

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

[Guest guest]

Thank you Chris!How is your daily living now?That is what I am so terrified

for him.He is going threw so much right now,I am scared by the time he is 30

he will end up in a wheelchair or worse!!In November he broke his rt

ankle,in a cast.That didn't slow him down a bit!!!3 weeks of being in the

cast he was palying with the other boys and went to jump down off of a log

and dislocated his left hip.This was the worset dislocation we have ever had

with him.His rt shoulder does it all the time and he puts it in himself like

it is nothing,but his hip,he couldn't.The hospital here had to transport him

to a diff hospital,and 5 hours later they finally gave him some pain

med.Took him to surgery,they thought they were going to have to put pins in

his hip,but didn't have to (Thank God!)He had to wear a brace on his " GOOD

LEG " as we said.He has a constant limp now on his left hip.The cast came off

3 weeks later and he has twisted 3 times and back we go everytime.All he has

to do is run on it and it swells now.He was 4 years old when we finally

found out what was wrong with our son.My husband and I both agreed not to

limit him,not to put him in a pads,helmet for everyday living.He has gotten

to the point know where we do need to protect the ankle,knee and his hip.We

have 3 children,my oldest is 10 and is very active!!!Soccer,baseball,and

football.We do allow my 8 year old play baseball.He loves it.It is very hard

for him to understand why he can't do the other sports like his brother.I

just know how hard it is for me,and I can't imagine what he goes threw.I can

not except " Theres nothing you can do! " I am sorry,I can't,maybe it is a mom

thing?!Please let me know how your pain and dealing with this as a child to

now has been for you.Thank you again!!!!!!!

>

>Reply-To: ceda

>To: ceda

>Subject: Re: EDS AND STUBBORN TEENS

>Date: Thu, 29 Mar 2001 12:28:10 -0500

>

>Hi Ruth!

>

>I too was an overactive child who was always hurtng myself. My guess is

>that

>you'll eventually get used to it as my parents did. (I'm 37 now) This is a

>tough

>balancing act for you, you cant limit him too much or he rebels (I did),

>but at

>the same time you need to be careful to let him particpate safely in the

>things

>that an 8 yr old does. I have made countless trips to the emergency room,

>had

>thousands (literally) of stitches sewn into my body, and never slowed down

>for

>any of them to heal. I know if my poor mother had to do it over again, I

>would

>always have had on long pants, long sleeve shirts, reinforced/padded knees

>and

>elbows. If he is out banging around with the other kids he'll eventually

>learn

>what hurts him and what doesnt, but knee pads, soccer shin gaurds, and the

>like

>will provide him incredible protection in the mean time. Remind him that

>if

>worn under his clothes the other kids won't even notice it, and he needs to

>be

>careful!

>

>Good luck!

>

>B.

>

>~~Ruth Brunick~~ wrote:

>

> > I would like to talk with you,I have an 8 year old son with EDS.Trying

>to

> > get him to be still in a chore itself.He is always hurting himself,and I

>am

> > going threw an emotional time with all of this.Please,I need help and

>some

> > advice!!Thanks,Ruth Brunick

> >

> > >From: littlekelli1976@...

> > >Reply-To: ceda

> > >To: <ceda >

> > >CC:

> > >Subject: Re: EDS AND STUBBORN TEENS

> > >Date: Mon, 26 Mar 2001 18:49:03 EST

> > >

> > >Boy!!! Reading that letter sounds like my mom about 12 years ago about

>me.

> > >I was SO stubborn! I just wanted to be NORMAL!! I might be some help

>for

> > >your 13 year old daughter, I know what she is going through. When I was

>her

> > >age I did not care about how bad I hurt, I just did not want the EDS to

> > >strip me of my identety and who I am beyond the EDS. But if I listened

>to

> > >my mom I could of save ALOT of the pain that I have now. E-mail me if

>you

> > >would like to talk. littlekelli1976@... Thank you and God bless!

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at http://explorer.msn.com

> >

> >

> >