confetti11
Senior Member
- Messages
- 279
Hello everyone, I don't post much but I've had something on my mind a lot lately with no group of people who would likely understand this, except perhaps you.
I've had chronic illness, diagnosed as some form of CFS, since 2000, when I was 30 years old.
As only you guys know, being at something like this for 16 years is beyond challenging. For me, it's left me somewhere between an expert at this to even more lost about it than day one.
My story is a little different I think in that I was fortunate to have the opportunity to be treated by one of the best doctors since late 2000. What is unfortunate about this treatment is it's cost an enormous amount of money, 99.9% out of pocket to at best a middle class family.
What isn't always counted into the cost too, by those who don't suffer in this way, is the loss of nearly all the relationships I had growing up, and all of my family. I found I was able to stay somewhat well enough through the years of ups and downs to keep most of my friends. But a few years ago, when the money ran out and I became desperate--and everyone's answers for me would only make my life worse--I left everyone behind and fought my way out. I had to leave behind anyone who didn't believe me, believe in me and want some level of normalcy for my future.
Cut to today, I work 50+ hours per week in an industry that can be lucrative, so I've been able to get myself almost completely out of debt and still own my home. Work is not easy and I certainly don't always feel good, but so far, I've been able to manage.
Right when I should be feeling some satisfaction and happiness that I've been able to reach some of my goals, I feel the opposite. Maybe because I can finally see the light out of crisis, and because I don't have the crisis so much in my face, I'm left in the silence to think about all that has been lost in the aftermath.
In addition, six months ago, my mom died just short of 80 years old. She helped me a lot while ill, but even our relationship was strained toward the end. I felt abandoned by her that she never even learned the name the illness I suffer with. She was generous and I'm grateful for that. Still, in everyone's inability to see what I was dealing with and my being too ill to have relationships or make a family of my own, I was left alone to deal with everything on my own. And because my family, who witnessed my suffering first hand, never grew to be advocates for me, no one around us knows that what I continue to deal with is real and not psychosomatic.
I guess the most recent blow for me is I found out my parent wrote me out of their will. My dad is 87 and still lives in assisted living but I was shown their will without prompting recently through another party nonetheless. I'm just flattened again that even though they helped me a lot over the years, they were satisfied knowing they would leave me alone and with nothing more coming from them. By the date, when they wrote their will, I was still in $70K debt and upside down on my house. I didn't have the job I have now and I was more desperate to be able to afford treatments and stay well enough to work than I could describe. They knew this and still made the decision to leave me nothing--if there was anything left, they left it with my healthy brother and his family. Whatever their intention was, it's just so hurtful.
So, all of this has led me to struggling to find my way of happiness. I'm not exaggerating when I say nearly all of my past I have no connection with--and I won't because they don't believe this illness is real. I'm not having that argument anymore with anyone.
Fortunately, my co-workers are awesome, and while some know I deal with some kind of chronic illness, none of them understand to what extent, and it just feels isolating for me to never be able to be fully honest with anyone.
There is a level of cruelty shown to people who struggle with illnesses like this that I could write a book about. I don't understand it, why it's acceptable, and never will. The people in my life were satisfied to leave me with no place to live, no credit, no real income and no proper medical treatments. And with tormenting symptoms. It has caused me over the years to just start feeling bad about myself. Which I don't think I did as much in the early years when I thought I had my parents and friends on my side. My view of the world has changed and I just don't feel the same way about things than I used to.
Anyway, thanks for reading. While I do have a counselor I talk to, I still don't find that very helpful because she's never been there. I just wanted to voice my reality to others who can maybe relate.
I've had chronic illness, diagnosed as some form of CFS, since 2000, when I was 30 years old.
As only you guys know, being at something like this for 16 years is beyond challenging. For me, it's left me somewhere between an expert at this to even more lost about it than day one.
My story is a little different I think in that I was fortunate to have the opportunity to be treated by one of the best doctors since late 2000. What is unfortunate about this treatment is it's cost an enormous amount of money, 99.9% out of pocket to at best a middle class family.
What isn't always counted into the cost too, by those who don't suffer in this way, is the loss of nearly all the relationships I had growing up, and all of my family. I found I was able to stay somewhat well enough through the years of ups and downs to keep most of my friends. But a few years ago, when the money ran out and I became desperate--and everyone's answers for me would only make my life worse--I left everyone behind and fought my way out. I had to leave behind anyone who didn't believe me, believe in me and want some level of normalcy for my future.
Cut to today, I work 50+ hours per week in an industry that can be lucrative, so I've been able to get myself almost completely out of debt and still own my home. Work is not easy and I certainly don't always feel good, but so far, I've been able to manage.
Right when I should be feeling some satisfaction and happiness that I've been able to reach some of my goals, I feel the opposite. Maybe because I can finally see the light out of crisis, and because I don't have the crisis so much in my face, I'm left in the silence to think about all that has been lost in the aftermath.
In addition, six months ago, my mom died just short of 80 years old. She helped me a lot while ill, but even our relationship was strained toward the end. I felt abandoned by her that she never even learned the name the illness I suffer with. She was generous and I'm grateful for that. Still, in everyone's inability to see what I was dealing with and my being too ill to have relationships or make a family of my own, I was left alone to deal with everything on my own. And because my family, who witnessed my suffering first hand, never grew to be advocates for me, no one around us knows that what I continue to deal with is real and not psychosomatic.
I guess the most recent blow for me is I found out my parent wrote me out of their will. My dad is 87 and still lives in assisted living but I was shown their will without prompting recently through another party nonetheless. I'm just flattened again that even though they helped me a lot over the years, they were satisfied knowing they would leave me alone and with nothing more coming from them. By the date, when they wrote their will, I was still in $70K debt and upside down on my house. I didn't have the job I have now and I was more desperate to be able to afford treatments and stay well enough to work than I could describe. They knew this and still made the decision to leave me nothing--if there was anything left, they left it with my healthy brother and his family. Whatever their intention was, it's just so hurtful.
So, all of this has led me to struggling to find my way of happiness. I'm not exaggerating when I say nearly all of my past I have no connection with--and I won't because they don't believe this illness is real. I'm not having that argument anymore with anyone.
Fortunately, my co-workers are awesome, and while some know I deal with some kind of chronic illness, none of them understand to what extent, and it just feels isolating for me to never be able to be fully honest with anyone.
There is a level of cruelty shown to people who struggle with illnesses like this that I could write a book about. I don't understand it, why it's acceptable, and never will. The people in my life were satisfied to leave me with no place to live, no credit, no real income and no proper medical treatments. And with tormenting symptoms. It has caused me over the years to just start feeling bad about myself. Which I don't think I did as much in the early years when I thought I had my parents and friends on my side. My view of the world has changed and I just don't feel the same way about things than I used to.
Anyway, thanks for reading. While I do have a counselor I talk to, I still don't find that very helpful because she's never been there. I just wanted to voice my reality to others who can maybe relate.
) is to go beyond your negative feelings. You'll never be able to understand why your parents made this choice. But over time, maybe w/ your counselor, you'll find that you can go beyond your wholly understandable feelings of betrayal, bitterness, rage...knowing that you've survived and already shown you can overcome extreme obstacles.
