[Grey Matter]

((I posted this in another board and realized it was probably in the wrong location. I am dying for advice))

I was diagnosed with chronic extreme inflammation of the cartilage, connective tissue, and chest wall (all in my chest). I am still being tested for lupus, which it is really starting to look like. While they come to doctors appointments with me, and when they are there they aren't in denial, they show care and respect and understand the new limitations of my body. But the second we go home, it's like I've made it all up in my head. When I cry from pain and need my sister to get my mom, my mom gets annoyed and goes "there is nothing I can do for them!".

My doctors advised against going to school/getting a job because my immune system is shot. And if I get sick before I am truly diagnosed, I can get sick enough to land in the hospital for weeks. My vitamin D and others were at level 4 on my last blood test. It makes me weak, exhausted. I. Am. In. Constant. Pain.

But my dad is pushing me to get a job. I had an interested party contact me today, and I feel like I shouldn't have said anything. Because while I want it, while I need it, while I missing working so god damn much, I need to LISTEN to my body right now. I can't let this get any worse. And alas, I have a job and I doubt I am going to be able to handle it.

My mom tends to shrug it off. My dad tends to push me to do these things my body CAN'T. "Go for a long walk", "Walk to the store and pick these up", "take the job! You can walk five miles!"

My parents were hesitant to bring me to the ER the other night when I was running a fever and my gallbladder was so inflamed my whole right side hurt. It took nearly 20 minutes of saying "SOMETHING ISN'T RIGHT" for it to click with them. I was admitted and waited for the surgery and my mom sighed a lot and my dad left the room again and again and I just DON'T GET IT. Am I being a burden? Is my chronic illnesses being made about them?

My brother was terminally ill. I get it. They are scared. But so am I. And I can't do this alone, I did everything else alone, but this is so heavy. And I need someone to respect me and understand. Ugh. I know my parents love me, but they need to realize I am not my brother. He has died, and I am here and alive and I need someone to be active with me in this situation or nothing is ever going to get resolved. I am learning things I can and cannot do anymore, and I need those boundaries respected. When I try to bring this up in conversation my mom goes "I am in pain everyday" and my dad will go "I am on dialysis" and yes I know these things but I respect their limitations and know their lives changed. Why am I different? Am I that easy to just lose?

[tinyrabbit]

I'm so sorry about your brother. It sounds like your parents are absolutely terrified to acknowledge that you're ill and are therefore being very resistant and defensive. Have they had any counselling to help them deal with your brother's death?

[Edda]

I'm truly sorry. I really am. I bet it feels crap on every level. My best advice would be plainly telling them how you feel and asking them why they do what they do. Get them sit down with you for a serious talk.

This should work with loving parents. Sadly not all of them are like that but I hope your folks do love you. Still, it disturbs me that your mum doesn't drop everything and rushes to you when you cry in pain.

I went through a similar phase when I was a teenager and I felt I couldn't bear the constant neglect, silent treatment, lack of eye contact etc. from my grandparents whom I lived with at that time. I was very sick with an acute, untreated case of pneumonia. One day I just felt I couldn't carry on and confronted them, pretty much in tears, asking what I must do so that they may care for me and my state.

They said that since I had failed a maths exam, my room was untidy and I had that annoying habit of expressing my opinion and dared to contradict them, I had a hell of a job ahead of me to ever make them accept me again. Besides - they said - they had already accepted me when my mother refused to abort me so what else could I possibly want.

Well, no comment.

I'm sure your parents are not of this kind. If I understand you well and your family have suffered the loss of your brother and your parents have issues themselves then they might really just be unable to cope with another serious illness in the family and might well be in denial.

In any case, I would say, whatever happens, do listen to your body. If your parents don't look after you the way they should, it falls to you to look after yourself.

I hope it works out.

[gayleggg]

Teen Idle, did your parents change after your brother's death? Did they show you more love and acceptance before he died? Just wondering if his death has had an impact on the way they are treating you now. I assume they care, since they are taking you to doctor's to find out what is going on with you. It could be that they are just to scared to even think you might be ill, so they are distancing themselves from you. Whatever, the cause, I'm really sorry they are not there for you in your time of need. I hope the doctors find a way soon to help get you out of this pain.

[Grey Matter]

Thank you guys. I will try to reply to everyone tomorrow when I am feeling up to it. But, Gayle, I always kind of felt like I was a second concern, even before my brother died. Maybe it was because he was terminally ill and that is where they put their focus, but I remember clearly confronting my mom about this years ago and telling her "you need to start caring for me and (my sister) like you care for (my brother)". And she was defensive and rude, etc. I expect the same thing will happen if I bring it up again.

I know my parents love me. They just aren't willing to accept the reality of the situation. I am now stuck with a job I wont be able to work, and literally begging them to take me to the ER when something isn't right. I have gotten the "I'm tired, we'll go in the morning" and "Just sleep it off" reasoning a dozen times. When a doctor tells me I shouldn't work or go to school, my dad shames me into doing these things. It's like they do not comprehend that it feels like knives are settled between every single one of my joints, that I want to sleep but can't because of the pain, etc.

I am truly an independent person and I have been since I was 12. But I know, with something like this, I need the support of my family or I will crash and burn faster than ever.

I just feel like I don't matter.

[IndieVisible]

I hope u get better soon. Your father should not push u to get a job until u and your doc feel your ready. As a parent I can tell you what I think is going on since they already been thru the mill with your brother, they are in complete denial there is any thing seriously wrong with you. This is their coping mechanism and it is not right or healthy for any one. But it's not that you are a burden or they don't care about you. They are terrified inside and won't admit it to anyone including themselves. When you saw your father keep leaving the room in ER, it was in too much pain could not stand facing the reality o it all. I am not making excuses for them, I just want u to see why they are the way they are. They need to accept reality. I hope they do for everyone's sake.

[Nobodyandnothing]

Since you are 23, might your parents be trying to lead you toward independence. Many young adults spend some time after school or internships at their parent's homes. At this point, there should be clear expectations by both parties. The parents may provide room and board on a no or low cost basis while the young adult develops a plan for moving from the parential home within a certain lenght of timr.

I believe that some of the actions by your parents are trying to teach you to get to the goals you wish to meet, including stable employment of some time amd leading to a place of your own way.

[Grey Matter]

Originally Posted by IndieVisible

I hope u get better soon. Your father should not push u to get a job until u and your doc feel your ready. As a parent I can tell you what I think is going on since they already been thru the mill with your brother, they are in complete denial there is any thing seriously wrong with you. This is their coping mechanism and it is not right or healthy for any one. But it's not that you are a burden or they don't care about you. They are terrified inside and won't admit it to anyone including themselves. When you saw your father keep leaving the room in ER, it was in too much pain could not stand facing the reality o it all. I am not making excuses for them, I just want u to see why they are the way they are. They need to accept reality. I hope they do for everyone's sake.

This makes a lot of sense. Thank you, Indie.

[Grey Matter]

Originally Posted by Nobodyandnothing

Since you are 23, might your parents be trying to lead you toward independence. Many young adults spend some time after school or internships at their parent's homes. At this point, there should be clear expectations by both parties. The parents may provide room and board on a no or low cost basis while the young adult develops a plan for moving from the parential home within a certain lenght of timr.

I believe that some of the actions by your parents are trying to teach you to get to the goals you wish to meet, including stable employment of some time amd leading to a place of your own way.

Nah, they really aren't. This is the first time in four years I haven't had a full time job or have been in school full time. When I was working, I paid for everything I needed and gave money, etc. It's been August of last year that I haven't been able to move. That and I am a primary caregiver to the both of them. And I can't leave my 17 year old sister to do that on top of school + college applications and meetings.

I think the issue is much deeper than that. It's been like this since I was 14. My brother came first, I came second, and in my dads eyes, I come in third. Still.

My parents know, and have seen, that I am able to live on my own. But right now with the pain, Being on my own would be unwise. I do not drive much due to my PTSD. And sometimes I cannot get up and down the stairs or out of bed alone. My doctors agree that it would be illogical to move out again right now, even if I have the funds. Physically, I need someone to help me do simple things. It makes me feel pathetic.

I wish I could live alone. I just can't right now.