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PTA Blog Talk

Out to Lunch

Published December 30, 2008 3:21 PM by Jason Marketti

Recently I went out to lunch with my co-workers. 

One asked about my family, so I layed it all out, my wife was fine, my son was adjusting well, youngest one was great, but my middle daughter has a new diagnosis; Schizophrenia.

I went on briefly to describe the change in diagnosis with the MD and the telemedicine my wife encountered during the visit.  This was met with indifference.  There were no follow up questions or comments about it.  Everyone went on to discuss another topic and I pondered why people do not want to discuss mental illness. 

For years mental illness was a hushed subject.  It was an institution where strange people were locked away from civilized people.  Topics like mental illness were rarely discussed 20 years ago and at times it seems nothing much has changed. 

Services are difficult to get, the state makes parents and caregivers jump through hoops just to be turned down for services that are needed.  Some school districts do not want to address the issues concerned about mental illness and one principle suggested we continue to either homeschool or to find a private school to send our daughter to.   Ahh, the dilemmas of parenthood.

I could describe the hours spent by both my wife and me on the phones with pharmacies, doctors, therapists, and teachers just to obtain help (and maybe a sympathetic ear), but very few will actually listen.  Most have said, "I am sorry there is nothing I can do."  And I do not believe that.  What they are saying is that they do not understand mental illness and they do not want to address it. 

Multiple doctors have been sought out as well as many therapists who have both said things like, "I think she is making it up."  Unfortunately they are not the ones who have to live with the illness.  And it is not a curable illness, it is a prolonged, treatable with (expensive) medication but not an exact science illness.  What works well for one will not for another and symptoms fluctuate from person to person.  Her symptoms affect our whole family in what we do, what we say and sometimes where we go. 

With all that said, I wonder what my co-workers will say when I tell them on Christmas day, December 25, 2008, at about 9:00 pm my youngest daughter had another grand mal seizure, it was her fourth grand mal that we have witnessed.  She is diagnosed with epilepsy.  Maybe this is another one of those subjects that co-workers do not want to listen to as well. 

Do people want me to tell them that everything is fine and life is a bed of roses?  Or should I be truthful and tell them what my life is really like when I get off work?    

 

 

6 comments

Jason,

This is going to be long...if I had your email I would send directly to you, but hoping you get this anyway.  I sent this to my sister.  She is one of the rare people you meet who has found a profession that fits their unique giftings.  She is scary accurate in her ability to recognize deficits and project outcomes.  I'm not being biased...others in her profession recognize it.  Your story touched me and I knew if anyone could give practical inside input it would be her.  So I sent your blog to her and then received consent to post her response anonymously.  She said it was fine.  I'll add this is in no way diagnosis, just personal experience...years and years of personal experience.  Perhaps it will help someone.  Here goes:

Wow....I don't think that he is alone.  

However, I am always hesitant to label a child with Bipolar or

Schizophrenia for two reasons.  One, I was trained by old school folks who believe that the "real" Bipolar and Schizophrenia are diagnosed after a psychotic break between the ages of 18-25.  I have seen a couple breaks that fall outside of that bracket, but it is the exception, not the rule.  New folks are, in my opinion, making those diagnoses a dumping ground just like we did ADD and ADHD in the late 80's early 90's.   So, if this child is 16-18, OK, I MIGHT buy it, otherwise I would really scrutinize the diagnosis.

Second, there are personality traits/disorders that mimic severe mental illness symptoms.  Borderline Personality Disorders can LOOK like Bipolar, Schizoaffective, and a few others.  

He is right, the field is either driven by fear or by a need to get

people seen and get them out of the office because I see a lot of sloppy diagnoses that I wouldn't agree with, and it's obvious in 10 minutes.  There is also that frustration compounded by the fact that medicine is a practice...and mental health is the bottom rung.  We know so little about the brain in comparison to the rest of the body.  Finding the right medications is like playing Russian Roulette.  You don't know you have the right or wrong one until you do!!

I don't know if people are afraid to confront patients, if they are just tired and don't really care or if they are that ignorant.  Scary, though.  The psychiatrist that I worked with said that the ability to see the things I do is a gift, I don't know that I agree with that, but I do know I recognize things by feeling a lot of time, when others try to overdo issues with logic.  Mentally Ill folks have a sense, a feel a look about them.  I can't always explain it, but something is there that shines through....Personality Disorders do too.

And I do see that people in the field are over-worked and I can imagine he doesn't get the time or the energy he needs to help him deal with the problem.  There might also be people telling him to do things he doesn't like (especially if it is a personality issue and they have asked him to set firm boundaries).   Many families get burned out WAY before the patient is 50.  

anon January 16, 2009 10:00 PM

It is difficult to contribute to a conversation when little is known about the subject especially a weighty one that may require empathy as well.  I hope your daughter finds the care she needs. Seems you are still a loving dad.  -Shane

Shane McDonald January 9, 2009 11:59 PM
Anchorage AK

Since your co-workers asked about your family, they should be prepared to listen with empathy.  Maybe they are embarrassed to realize how out of touch they are and probably search to say the right thing.  If nothing else, they could offer their prayers or positive thoughts to your family.  I offer mine, though you don't know me.  My granddaughter suffered from seizures at a very young age, but thankfully outgrew them.  My thoughts are with you.

Ruth January 4, 2009 9:40 AM
Lexington SC

Jason,

I feel for you. Family of mine have bi-polar.  Mental illness is often forgotten in health care and resources are scarce.  In the institutions care is great, however, once that person is in society there is very little follow up for them.  

States lack the funds for adequate care, psychiatrists are often overbooked and insurances don't want to pay for it.  It is usually the parents/caregivers who pay out of pocket for better care.  

NAMI is great.  Groups often offer a guide for resources such as treatments, MDs, therapists, etc.  And yes, tell your co-workers about what is going on.  People need to know.  

Karen January 1, 2009 1:19 PM

I completely understand where you are coming from.  We have a family member with a mental health diagnosis.  So many are too quick to turn their cheek or start another conversation when trying to discuss these issues.  The mental health field is strange and sometimes disheartening. Not to mention that most insurances are not reimbursing for certain treatments.

I hope things get better for your family and hope that people will be more open to discuss mental illnesses with you.

Allisha Neil, PTA December 31, 2008 7:26 PM
PA

I completely understand how you feel about the lack of response

of people in general. People seem to want to avoid that subject

but it is especially disheartening when the persons to whom you are trying to communicate are health care provider and co-workers.  They should know better.

I suggest you contact your local NAMI chapter and do try to

attend some meetings. You will meet lots of people who have been though or are going through the same things and will learn a great deal which should help your situation.

Chris Kenron, PT December 30, 2008 10:59 PM
Chicago

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    Jason J. Marketti
    Occupation: Physical Therapist Assistant
    Setting: San Jacinto, CA
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