Question about After Diagnosis

Onederfulmakr · Sep 27, 2008

Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
Although i had been sick my whole life and missed many years of school and lots of hospital visits, a cf diagnosis still came as a shock to me. Since i went in and asked my Dr. to test me, i thought handling the diagnosis would be easier. I am an extremely mild case compared to many but i know the mental process you go through after diagnosis is very similar.
SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. So, anything that you wish the center would offer or could have done differently in your adult dignosis?

thank you so much for your help. My hopes are someday to fix what is missing.
i wish you all the best.. and good health!
-Anna, 22 w/cf

Onederfulmakr · Sep 27, 2008

Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
Although i had been sick my whole life and missed many years of school and lots of hospital visits, a cf diagnosis still came as a shock to me. Since i went in and asked my Dr. to test me, i thought handling the diagnosis would be easier. I am an extremely mild case compared to many but i know the mental process you go through after diagnosis is very similar.
SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. So, anything that you wish the center would offer or could have done differently in your adult dignosis?

thank you so much for your help. My hopes are someday to fix what is missing.
i wish you all the best.. and good health!
-Anna, 22 w/cf

Onederfulmakr · Sep 27, 2008

Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
Although i had been sick my whole life and missed many years of school and lots of hospital visits, a cf diagnosis still came as a shock to me. Since i went in and asked my Dr. to test me, i thought handling the diagnosis would be easier. I am an extremely mild case compared to many but i know the mental process you go through after diagnosis is very similar.
SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. So, anything that you wish the center would offer or could have done differently in your adult dignosis?

thank you so much for your help. My hopes are someday to fix what is missing.
i wish you all the best.. and good health!
-Anna, 22 w/cf

Onederfulmakr · Sep 27, 2008

Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
Although i had been sick my whole life and missed many years of school and lots of hospital visits, a cf diagnosis still came as a shock to me. Since i went in and asked my Dr. to test me, i thought handling the diagnosis would be easier. I am an extremely mild case compared to many but i know the mental process you go through after diagnosis is very similar.
SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. So, anything that you wish the center would offer or could have done differently in your adult dignosis?

thank you so much for your help. My hopes are someday to fix what is missing.
i wish you all the best.. and good health!
-Anna, 22 w/cf

Onederfulmakr · Sep 27, 2008

Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
 I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
 Although i had been sick my whole life and missed many years of school and lots of hospital visits, a cf diagnosis still came as a shock to me. Since i went in and asked my Dr. to test me, i thought handling the diagnosis would be easier. I am an extremely mild case compared to many but i know the mental process you go through after diagnosis is very similar.
 SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. So, anything that you wish the center would offer or could have done differently in your adult dignosis?
 
 thank you so much for your help. My hopes are someday to fix what is missing.
 i wish you all the best.. and good health!
 -Anna, 22 w/cf

Landy · Sep 28, 2008

I have always known, so I really don't have input as far as that goes, but I may suggest you also put this post in the "Newly Diagnosed" section. Hopefully there will be some folks there that can help you out & have ideas for you.

I like your idea of having others to reach out to.
Due to cross infection risks, it may be hard for a person-to-person or group meeting to happen, but a phone list or email address list of other CFs you could contact would be great--then you can talk with someone that has been in your shoes and will understand what you're going through and can offer support.

Landy · Sep 28, 2008

I have always known, so I really don't have input as far as that goes, but I may suggest you also put this post in the "Newly Diagnosed" section. Hopefully there will be some folks there that can help you out & have ideas for you.

I like your idea of having others to reach out to.
Due to cross infection risks, it may be hard for a person-to-person or group meeting to happen, but a phone list or email address list of other CFs you could contact would be great--then you can talk with someone that has been in your shoes and will understand what you're going through and can offer support.

Landy · Sep 28, 2008

I have always known, so I really don't have input as far as that goes, but I may suggest you also put this post in the "Newly Diagnosed" section. Hopefully there will be some folks there that can help you out & have ideas for you.

I like your idea of having others to reach out to.
Due to cross infection risks, it may be hard for a person-to-person or group meeting to happen, but a phone list or email address list of other CFs you could contact would be great--then you can talk with someone that has been in your shoes and will understand what you're going through and can offer support.

Landy · Sep 28, 2008

I have always known, so I really don't have input as far as that goes, but I may suggest you also put this post in the "Newly Diagnosed" section. Hopefully there will be some folks there that can help you out & have ideas for you.

I like your idea of having others to reach out to.
Due to cross infection risks, it may be hard for a person-to-person or group meeting to happen, but a phone list or email address list of other CFs you could contact would be great--then you can talk with someone that has been in your shoes and will understand what you're going through and can offer support.

Landy · Sep 28, 2008

I have always known, so I really don't have input as far as that goes, but I may suggest you also put this post in the "Newly Diagnosed" section. Hopefully there will be some folks there that can help you out & have ideas for you.
 
 I like your idea of having others to reach out to.
 Due to cross infection risks, it may be hard for a person-to-person or group meeting to happen, but a phone list or email address list of other CFs you could contact would be great--then you can talk with someone that has been in your shoes and will understand what you're going through and can offer support.

MicheleGazelle · Sep 28, 2008

Hi Anna,
I was diagnosed the month before I turned 36. I didn't have a problem with it. I was relieved to have a name for it. However, I did have a problem with the lame attempts the doctors made to "reassure" me. They were basically trying to tell me I shouldn't get all wrist-slashingly depressed about it while sounding waaaay more bummed about the whole thing than I felt. I felt empowered. I felt like "I have always known I had respiratory problems and gut problems and was sick a lot. Now we have an explanation for WHY and surely we can deal with this more effectively!" For me it was genuinly Good News to have a better name than "crazy" for my problem. Over the years, I had lots of doctors behave like I was a hypochondriac. It was maddening. But, unfortunately, getting a diagnosis wasn't quite the magic wand to open doors (medically) as I had assumed it would be. I got taken more seriously and given stronger drugs when I did end up in the ER, but I was also told "people like you don't get well - symptom management is the name of the game". And since I "wasn't that sick" (for a person with CF -- never mind that I was still in real danger of dying), my doctor didn't really try to get me well particularly. It wasn't really a crisis in his mind.

So I think ye olde bedside manner is something that most doctors could use some help with and it would be nice if doctors were educated about the fact that "mild" CF is still a serious, life-threatening condition and should be treated as such.

MicheleGazelle · Sep 28, 2008

Hi Anna,
I was diagnosed the month before I turned 36. I didn't have a problem with it. I was relieved to have a name for it. However, I did have a problem with the lame attempts the doctors made to "reassure" me. They were basically trying to tell me I shouldn't get all wrist-slashingly depressed about it while sounding waaaay more bummed about the whole thing than I felt. I felt empowered. I felt like "I have always known I had respiratory problems and gut problems and was sick a lot. Now we have an explanation for WHY and surely we can deal with this more effectively!" For me it was genuinly Good News to have a better name than "crazy" for my problem. Over the years, I had lots of doctors behave like I was a hypochondriac. It was maddening. But, unfortunately, getting a diagnosis wasn't quite the magic wand to open doors (medically) as I had assumed it would be. I got taken more seriously and given stronger drugs when I did end up in the ER, but I was also told "people like you don't get well - symptom management is the name of the game". And since I "wasn't that sick" (for a person with CF -- never mind that I was still in real danger of dying), my doctor didn't really try to get me well particularly. It wasn't really a crisis in his mind.

So I think ye olde bedside manner is something that most doctors could use some help with and it would be nice if doctors were educated about the fact that "mild" CF is still a serious, life-threatening condition and should be treated as such.

MicheleGazelle · Sep 28, 2008

Hi Anna,
I was diagnosed the month before I turned 36. I didn't have a problem with it. I was relieved to have a name for it. However, I did have a problem with the lame attempts the doctors made to "reassure" me. They were basically trying to tell me I shouldn't get all wrist-slashingly depressed about it while sounding waaaay more bummed about the whole thing than I felt. I felt empowered. I felt like "I have always known I had respiratory problems and gut problems and was sick a lot. Now we have an explanation for WHY and surely we can deal with this more effectively!" For me it was genuinly Good News to have a better name than "crazy" for my problem. Over the years, I had lots of doctors behave like I was a hypochondriac. It was maddening. But, unfortunately, getting a diagnosis wasn't quite the magic wand to open doors (medically) as I had assumed it would be. I got taken more seriously and given stronger drugs when I did end up in the ER, but I was also told "people like you don't get well - symptom management is the name of the game". And since I "wasn't that sick" (for a person with CF -- never mind that I was still in real danger of dying), my doctor didn't really try to get me well particularly. It wasn't really a crisis in his mind.

So I think ye olde bedside manner is something that most doctors could use some help with and it would be nice if doctors were educated about the fact that "mild" CF is still a serious, life-threatening condition and should be treated as such.

MicheleGazelle · Sep 28, 2008

Hi Anna,
I was diagnosed the month before I turned 36. I didn't have a problem with it. I was relieved to have a name for it. However, I did have a problem with the lame attempts the doctors made to "reassure" me. They were basically trying to tell me I shouldn't get all wrist-slashingly depressed about it while sounding waaaay more bummed about the whole thing than I felt. I felt empowered. I felt like "I have always known I had respiratory problems and gut problems and was sick a lot. Now we have an explanation for WHY and surely we can deal with this more effectively!" For me it was genuinly Good News to have a better name than "crazy" for my problem. Over the years, I had lots of doctors behave like I was a hypochondriac. It was maddening. But, unfortunately, getting a diagnosis wasn't quite the magic wand to open doors (medically) as I had assumed it would be. I got taken more seriously and given stronger drugs when I did end up in the ER, but I was also told "people like you don't get well - symptom management is the name of the game". And since I "wasn't that sick" (for a person with CF -- never mind that I was still in real danger of dying), my doctor didn't really try to get me well particularly. It wasn't really a crisis in his mind.

So I think ye olde bedside manner is something that most doctors could use some help with and it would be nice if doctors were educated about the fact that "mild" CF is still a serious, life-threatening condition and should be treated as such.

MicheleGazelle · Sep 28, 2008

Hi Anna,
 I was diagnosed the month before I turned 36. I didn't have a problem with it. I was relieved to have a name for it. However, I did have a problem with the lame attempts the doctors made to "reassure" me. They were basically trying to tell me I shouldn't get all wrist-slashingly depressed about it while sounding waaaay more bummed about the whole thing than I felt. I felt empowered. I felt like "I have always known I had respiratory problems and gut problems and was sick a lot. Now we have an explanation for WHY and surely we can deal with this more effectively!" For me it was genuinly Good News to have a better name than "crazy" for my problem. Over the years, I had lots of doctors behave like I was a hypochondriac. It was maddening. But, unfortunately, getting a diagnosis wasn't quite the magic wand to open doors (medically) as I had assumed it would be. I got taken more seriously and given stronger drugs when I did end up in the ER, but I was also told "people like you don't get well - symptom management is the name of the game". And since I "wasn't that sick" (for a person with CF -- never mind that I was still in real danger of dying), my doctor didn't really try to get me well particularly. It wasn't really a crisis in his mind.
 
 So I think ye olde bedside manner is something that most doctors could use some help with and it would be nice if doctors were educated about the fact that "mild" CF is still a serious, life-threatening condition and should be treated as such.

welshwitch · Sep 28, 2008

Hi Anna,

this is an excellent question. I think for me what was needed was for someone to help me "demystify" CF. What do I mean by that? Well (and by the way I was diagnosed as a baby but my family didn't really explain to me much about the social aspects of having CF, just what I needed to do to stay healthy.)

There are many myths about CF that may or may not have been inadvertently taught to you. One is that it's a childhood disease and that everyone who has it dies as a child. I was given messages like this. I was also given subtle messages by both doctors and friends of the family that I may not live to see my 20th birthday. Also that I can't and shouldn't have kids. Etc.

The fact that CF fundamentally isolates its patients from one another (brought on by fear of cross infection) gives yet another message: that those of us who has this disease should not communicate and see each other. The many years that I went to the doctor's office only to wait alone in a waiting room and that I knew that other CFers were there, sequestered by closed doors sent a message that I somehow needed to be quarentined. It set up a really eerie vibe for me that still haunts me to this day.

It taught me to fear CF, to not talk about it, and to not reach out to others who have it, rather, if I meet someone with CF, I should avoid them. It taught me that CF will progressively debilitate you, disable you and eventually you will be on an oxygen tank. I had no CF role models nor anyone with CF to tell me anything positive. It took me until my late 20s to start to untangles these myths that I had created for myself. I wish that someone had sat me down and told me, yes, you have this disease but look people with CF can be doctors, lawyers, teachers, parents, get married, etc. I had to discover that myself through searching. It really helped me to realize that people w. CF can have basically normal lives.

SO, that is my long winded answer! not sure how this would translate into practice but something about a CF role model program that avoided cross infection would be the general idea.

welshwitch · Sep 28, 2008

Hi Anna,

this is an excellent question. I think for me what was needed was for someone to help me "demystify" CF. What do I mean by that? Well (and by the way I was diagnosed as a baby but my family didn't really explain to me much about the social aspects of having CF, just what I needed to do to stay healthy.)

There are many myths about CF that may or may not have been inadvertently taught to you. One is that it's a childhood disease and that everyone who has it dies as a child. I was given messages like this. I was also given subtle messages by both doctors and friends of the family that I may not live to see my 20th birthday. Also that I can't and shouldn't have kids. Etc.

The fact that CF fundamentally isolates its patients from one another (brought on by fear of cross infection) gives yet another message: that those of us who has this disease should not communicate and see each other. The many years that I went to the doctor's office only to wait alone in a waiting room and that I knew that other CFers were there, sequestered by closed doors sent a message that I somehow needed to be quarentined. It set up a really eerie vibe for me that still haunts me to this day.

It taught me to fear CF, to not talk about it, and to not reach out to others who have it, rather, if I meet someone with CF, I should avoid them. It taught me that CF will progressively debilitate you, disable you and eventually you will be on an oxygen tank. I had no CF role models nor anyone with CF to tell me anything positive. It took me until my late 20s to start to untangles these myths that I had created for myself. I wish that someone had sat me down and told me, yes, you have this disease but look people with CF can be doctors, lawyers, teachers, parents, get married, etc. I had to discover that myself through searching. It really helped me to realize that people w. CF can have basically normal lives.

SO, that is my long winded answer! not sure how this would translate into practice but something about a CF role model program that avoided cross infection would be the general idea.

welshwitch · Sep 28, 2008

Hi Anna,

this is an excellent question. I think for me what was needed was for someone to help me "demystify" CF. What do I mean by that? Well (and by the way I was diagnosed as a baby but my family didn't really explain to me much about the social aspects of having CF, just what I needed to do to stay healthy.)

There are many myths about CF that may or may not have been inadvertently taught to you. One is that it's a childhood disease and that everyone who has it dies as a child. I was given messages like this. I was also given subtle messages by both doctors and friends of the family that I may not live to see my 20th birthday. Also that I can't and shouldn't have kids. Etc.

The fact that CF fundamentally isolates its patients from one another (brought on by fear of cross infection) gives yet another message: that those of us who has this disease should not communicate and see each other. The many years that I went to the doctor's office only to wait alone in a waiting room and that I knew that other CFers were there, sequestered by closed doors sent a message that I somehow needed to be quarentined. It set up a really eerie vibe for me that still haunts me to this day.

It taught me to fear CF, to not talk about it, and to not reach out to others who have it, rather, if I meet someone with CF, I should avoid them. It taught me that CF will progressively debilitate you, disable you and eventually you will be on an oxygen tank. I had no CF role models nor anyone with CF to tell me anything positive. It took me until my late 20s to start to untangles these myths that I had created for myself. I wish that someone had sat me down and told me, yes, you have this disease but look people with CF can be doctors, lawyers, teachers, parents, get married, etc. I had to discover that myself through searching. It really helped me to realize that people w. CF can have basically normal lives.

SO, that is my long winded answer! not sure how this would translate into practice but something about a CF role model program that avoided cross infection would be the general idea.

welshwitch · Sep 28, 2008

Hi Anna,

this is an excellent question. I think for me what was needed was for someone to help me "demystify" CF. What do I mean by that? Well (and by the way I was diagnosed as a baby but my family didn't really explain to me much about the social aspects of having CF, just what I needed to do to stay healthy.)

There are many myths about CF that may or may not have been inadvertently taught to you. One is that it's a childhood disease and that everyone who has it dies as a child. I was given messages like this. I was also given subtle messages by both doctors and friends of the family that I may not live to see my 20th birthday. Also that I can't and shouldn't have kids. Etc.

The fact that CF fundamentally isolates its patients from one another (brought on by fear of cross infection) gives yet another message: that those of us who has this disease should not communicate and see each other. The many years that I went to the doctor's office only to wait alone in a waiting room and that I knew that other CFers were there, sequestered by closed doors sent a message that I somehow needed to be quarentined. It set up a really eerie vibe for me that still haunts me to this day.

It taught me to fear CF, to not talk about it, and to not reach out to others who have it, rather, if I meet someone with CF, I should avoid them. It taught me that CF will progressively debilitate you, disable you and eventually you will be on an oxygen tank. I had no CF role models nor anyone with CF to tell me anything positive. It took me until my late 20s to start to untangles these myths that I had created for myself. I wish that someone had sat me down and told me, yes, you have this disease but look people with CF can be doctors, lawyers, teachers, parents, get married, etc. I had to discover that myself through searching. It really helped me to realize that people w. CF can have basically normal lives.

SO, that is my long winded answer! not sure how this would translate into practice but something about a CF role model program that avoided cross infection would be the general idea.

welshwitch · Sep 28, 2008

Hi Anna,
 
 this is an excellent question. I think for me what was needed was for someone to help me "demystify" CF. What do I mean by that? Well (and by the way I was diagnosed as a baby but my family didn't really explain to me much about the social aspects of having CF, just what I needed to do to stay healthy.)
 
 There are many myths about CF that may or may not have been inadvertently taught to you. One is that it's a childhood disease and that everyone who has it dies as a child. I was given messages like this. I was also given subtle messages by both doctors and friends of the family that I may not live to see my 20th birthday. Also that I can't and shouldn't have kids. Etc.
 
 The fact that CF fundamentally isolates its patients from one another (brought on by fear of cross infection) gives yet another message: that those of us who has this disease should not communicate and see each other. The many years that I went to the doctor's office only to wait alone in a waiting room and that I knew that other CFers were there, sequestered by closed doors sent a message that I somehow needed to be quarentined. It set up a really eerie vibe for me that still haunts me to this day.
 
 It taught me to fear CF, to not talk about it, and to not reach out to others who have it, rather, if I meet someone with CF, I should avoid them. It taught me that CF will progressively debilitate you, disable you and eventually you will be on an oxygen tank. I had no CF role models nor anyone with CF to tell me anything positive. It took me until my late 20s to start to untangles these myths that I had created for myself. I wish that someone had sat me down and told me, yes, you have this disease but look people with CF can be doctors, lawyers, teachers, parents, get married, etc. I had to discover that myself through searching. It really helped me to realize that people w. CF can have basically normal lives.
 
 SO, that is my long winded answer! not sure how this would translate into practice but something about a CF role model program that avoided cross infection would be the general idea.

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