Helping Family Understand your Automimmune Disease

Posted by rosanna1959 @rosanna1959, Feb 22, 2018

My mom told me she doesn’t want to hear if I am in pain. Her concern is she may have to help financially she is well able to and loves to tell me all the things she buys for herself knowing I am in pain and struggling with money. Does anyone else go through this

@badboys1965 I have learned that if I am not the one to initiate contact it usually does not happen. Things change, people change, family dynamics change. For now let it go as best as you can and focus on "you". People seem to be busier now than I recall when my children were growing up and even less so when I was young. The world is a hectic place for sure. I have learned that taking care of myself is paramount. As long as I can take care of things in my life it is one less thing family members have to be concerned with. Sometimes how we see ourselves is how we believe others see us. I have always been very independent and I know other people who get upset with family members because they see little contact as others not caring. Maybe you could still reach out to them to just say "hello", ask how they are doing and let it go at that. I am sure there are many who wish things were as they had been in the past. Try finding others with similar interests, learn a new hobby and seek a support system other than family.
When you say you have heart disease would you be willing to be more specific?

Liked by badboys1965

REPLY

@parus, I have cardiomyopathy.I had it since I was 35 years old. I had a serious infection due to surgery that was not heart related. the infection went straight to my heart. I have been fighting an up hill battle for years. One thing i can is that I wont let it win. Thanks for the support on family issues. Trudy

Liked by Parus

REPLY
@badboys1965

I guess what am really trying to say is that the phone works both ways. My family knows where i live and they got my number. I guess I dont understand why they choose to be so distant. Half of my family does not know I have heart disease and the other half doesnt want to be bothered by it. my sister Rose, well that is a story in its self. I just wish it was like years ago when my parents were alive. we were all close then. now everyone is out for themselves. Either to busy or working long hours. Just to pick up the phone and say HELLO would be nice. I have tried to at least keep the family together but it didnt do any good. Thank you for reading this. Trudy

Jump to this post

Hello @badboys1965 I am Scott and was the primary caregiver for my wife during her war with brain cancer. I am sorry to read of your challenges with family during your illness. It brought back many difficult and challenging memories!

At my desk I have the quote by Dr. Martin Luther King "In the end, we will remember not the words of our enemies, but the silence of our friends." As a caregiver nothing is truer to me than this quote!

I also have written down and taped on the wall a comment made by a good friend of our daughter's, who lost her mom. Early on she told our daughter "Prepare yourself. You will be shocked by who is silent during your journey and even more shocked by the few who stay with you." Again incredibly true in our case.

I won't go into much detail, but I have two sisters, each of whom NEVER stepped foot in our home, called, or wrote during the 14+ years of my wife's war! My wife had five siblings and only one of them stayed in touch with me. Friends of 40+ years also vanished, Two friends stayed in close touch and they were not at all the ones my wife and I would have ever guessed world have!

I have no answer for why this happens to so many. My only guess is some simply lack any feelings of empathy. With others perhaps it is 'out of sight out of mind', which is a simpler, less painful way to live when someone you know is suffering.

If I had a penny for each time someone said to me 'take care of yourself' while I was a caregiver, but then did nothing I'd be a very rich man! If I had a nickel for each time someone said 'let me help' I'd maybe have a quarter. 🙂

I send you courage, strength, and peace!

REPLY

Hello @rosanna1959

It has been a while since you first posted. I hope that you are find the support that you need during this time of illness and recovery.

I hope you are feeling better, I would love to hear from you.

Teresa

REPLY
@badboys1965

I guess what am really trying to say is that the phone works both ways. My family knows where i live and they got my number. I guess I dont understand why they choose to be so distant. Half of my family does not know I have heart disease and the other half doesnt want to be bothered by it. my sister Rose, well that is a story in its self. I just wish it was like years ago when my parents were alive. we were all close then. now everyone is out for themselves. Either to busy or working long hours. Just to pick up the phone and say HELLO would be nice. I have tried to at least keep the family together but it didnt do any good. Thank you for reading this. Trudy

Jump to this post

I love MLK's quote. AMEN!!! I think people who tend to fall away have fear; also people just don't want to hear it – very sad, but true.
Having gone through illness with my parents and now problems of my own, I always try to reach out to help – but you have to know your own boundaries.

REPLY
@badboys1965

Hi, I am new to this group and would like too tell you about Family. My name is Trudy, am 46 years old and i have heart disease with a pace maker. A couple a months ago I was hospitalized for having a staff infection. I was in the hospital for 32 days. In and out of the ICU units and almost died. How should i put this, my family could of cared less. I dont get any phone calls to even see how am doing at home or if i could use some help. Thank god for my husband Mark for always being there. I have three brothers and three sisters and none of them even care, I had heart trouble for about 13 years now and the only one that stood with me was Mark. My older sister Rose lives in the same complex as we do. I have not talked to her in months. Rose was very mean to me and said to me that she wished I would have a short life. well, I almost did . To tell you the truth my whole family doesnt even believe i have any problems with my heart.I had try calling them and that would just get me more upset. They dont call me at xmas or any other holiday. In matter of fact Mark and I dont even get invited. I spent a couple of holidays in the hospital and didnt get a visitor or even a phone call. Mark says i have to move on without them in my life. Maybe he is right.I dont need the stress that is for sure. I have cried and cried over them and it didnt get me very far. I really dont believe that things will get better with all of them. So, am going to try to move on with out them. With warm thoughts, Trudy

Jump to this post

@First, welcome and I hope you feel like the response you get here is born of caring and truly wanting to help others with things we have experienced. I am very sorry for your lack of familial support; I have never known anything like that as My extended family on my mother's side makes up for the complete "it is all about me" from the other side of my family. My wife's extended family shows much greater concern for me than anyone from my Father's side. So, I guess I lied when I said I don't know anything about abandonment, but I guess I have never really thought too much about it because the other extended family has more than compensated. I am also glad you have your husband and I get the same support from my wife when I need some caretaking and she does so much else also; my Wonder Woman! All I would know to suggest is to try to find community where you are that may take the place of your family, but I know there will still be a hurt there that just won't go away.

REPLY
@badboys1965

Hi, I am new to this group and would like too tell you about Family. My name is Trudy, am 46 years old and i have heart disease with a pace maker. A couple a months ago I was hospitalized for having a staff infection. I was in the hospital for 32 days. In and out of the ICU units and almost died. How should i put this, my family could of cared less. I dont get any phone calls to even see how am doing at home or if i could use some help. Thank god for my husband Mark for always being there. I have three brothers and three sisters and none of them even care, I had heart trouble for about 13 years now and the only one that stood with me was Mark. My older sister Rose lives in the same complex as we do. I have not talked to her in months. Rose was very mean to me and said to me that she wished I would have a short life. well, I almost did . To tell you the truth my whole family doesnt even believe i have any problems with my heart.I had try calling them and that would just get me more upset. They dont call me at xmas or any other holiday. In matter of fact Mark and I dont even get invited. I spent a couple of holidays in the hospital and didnt get a visitor or even a phone call. Mark says i have to move on without them in my life. Maybe he is right.I dont need the stress that is for sure. I have cried and cried over them and it didnt get me very far. I really dont believe that things will get better with all of them. So, am going to try to move on with out them. With warm thoughts, Trudy

Jump to this post

@Dear gman:, i think you are so right. LONELINESS (to me) is the biggest number one hurtful way to suffer and die It is a torture of the mind and of the body. Peach

Liked by badboys1965

REPLY

Dear peach414144, I couldnt of said it better. My husband Mark said I have to let go of my family and move on. Hopefully I will have the strength and courage to do just that. I am working on it slowly. It is painful and mind boggling to think that family can hurt you so much and dont even blink and eye about either. Trudy

REPLY
@badboys1965

Hi, I am new to this group and would like too tell you about Family. My name is Trudy, am 46 years old and i have heart disease with a pace maker. A couple a months ago I was hospitalized for having a staff infection. I was in the hospital for 32 days. In and out of the ICU units and almost died. How should i put this, my family could of cared less. I dont get any phone calls to even see how am doing at home or if i could use some help. Thank god for my husband Mark for always being there. I have three brothers and three sisters and none of them even care, I had heart trouble for about 13 years now and the only one that stood with me was Mark. My older sister Rose lives in the same complex as we do. I have not talked to her in months. Rose was very mean to me and said to me that she wished I would have a short life. well, I almost did . To tell you the truth my whole family doesnt even believe i have any problems with my heart.I had try calling them and that would just get me more upset. They dont call me at xmas or any other holiday. In matter of fact Mark and I dont even get invited. I spent a couple of holidays in the hospital and didnt get a visitor or even a phone call. Mark says i have to move on without them in my life. Maybe he is right.I dont need the stress that is for sure. I have cried and cried over them and it didnt get me very far. I really dont believe that things will get better with all of them. So, am going to try to move on with out them. With warm thoughts, Trudy

Jump to this post

Agreed! Suggestions – get a ride to a nursing home and volunteer, the residents sometimes have no one and really appreciate the company for a little while. And it helps take one's mind off one's own probs., volunteering.

REPLY
@badboys1965

Hi, I am new to this group and would like too tell you about Family. My name is Trudy, am 46 years old and i have heart disease with a pace maker. A couple a months ago I was hospitalized for having a staff infection. I was in the hospital for 32 days. In and out of the ICU units and almost died. How should i put this, my family could of cared less. I dont get any phone calls to even see how am doing at home or if i could use some help. Thank god for my husband Mark for always being there. I have three brothers and three sisters and none of them even care, I had heart trouble for about 13 years now and the only one that stood with me was Mark. My older sister Rose lives in the same complex as we do. I have not talked to her in months. Rose was very mean to me and said to me that she wished I would have a short life. well, I almost did . To tell you the truth my whole family doesnt even believe i have any problems with my heart.I had try calling them and that would just get me more upset. They dont call me at xmas or any other holiday. In matter of fact Mark and I dont even get invited. I spent a couple of holidays in the hospital and didnt get a visitor or even a phone call. Mark says i have to move on without them in my life. Maybe he is right.I dont need the stress that is for sure. I have cried and cried over them and it didnt get me very far. I really dont believe that things will get better with all of them. So, am going to try to move on with out them. With warm thoughts, Trudy

Jump to this post

@Dear Stressed, in the recent past i have been a volunteer for many of my cities departments. Am still for one. Now at age 80 I can stay at home (i live alone) AND TAKE CARE OF MY saved ANIMALS. NOW, 2 CATS and 2 dogs. Most of the family and friends are upstairs (in heaven) waiting for me. My desire is to stay home and hopefully not have to be in s nursing home with 2 pinched nerves in my neck, one pinched nerve in my lumber spine and two lumbar disks bulging. I guess the pain is just another person talking to me. I will still smile and play the music. It is good to see you are helping with your suggestions and i thank you for that. Peach

REPLY
@badboys1965

Hi, I am new to this group and would like too tell you about Family. My name is Trudy, am 46 years old and i have heart disease with a pace maker. A couple a months ago I was hospitalized for having a staff infection. I was in the hospital for 32 days. In and out of the ICU units and almost died. How should i put this, my family could of cared less. I dont get any phone calls to even see how am doing at home or if i could use some help. Thank god for my husband Mark for always being there. I have three brothers and three sisters and none of them even care, I had heart trouble for about 13 years now and the only one that stood with me was Mark. My older sister Rose lives in the same complex as we do. I have not talked to her in months. Rose was very mean to me and said to me that she wished I would have a short life. well, I almost did . To tell you the truth my whole family doesnt even believe i have any problems with my heart.I had try calling them and that would just get me more upset. They dont call me at xmas or any other holiday. In matter of fact Mark and I dont even get invited. I spent a couple of holidays in the hospital and didnt get a visitor or even a phone call. Mark says i have to move on without them in my life. Maybe he is right.I dont need the stress that is for sure. I have cried and cried over them and it didnt get me very far. I really dont believe that things will get better with all of them. So, am going to try to move on with out them. With warm thoughts, Trudy

Jump to this post

I understand, Trudy. My late husband was in the hospital for 6 weeks before he passed away, and not one of his eight brothers or sisters that all lived nearby came to see him. Unfortunately for them, in later years four of his siblings also came to have the same type of cancer as he did. They endured the trials of fighting the cancer their brother did, but I am thankful that one of them survived and became caring and compassionate after their ordeal. I don't wish bad for others, but sometimes I'm afraid in order to feel beyond themselves, there are some people that have to walk in another's shoes to awaken their hearts. Try not to dwell on those that have hurt you. I feel badly that my husband was treated this way by his family, but I do not dwell on it and have long-moved on and do not spend time on people and actions that I couldn't then, and can't now change. My best wishes and prayers for you.

Liked by badboys1965

REPLY
@badboys1965

Hi, I am new to this group and would like too tell you about Family. My name is Trudy, am 46 years old and i have heart disease with a pace maker. A couple a months ago I was hospitalized for having a staff infection. I was in the hospital for 32 days. In and out of the ICU units and almost died. How should i put this, my family could of cared less. I dont get any phone calls to even see how am doing at home or if i could use some help. Thank god for my husband Mark for always being there. I have three brothers and three sisters and none of them even care, I had heart trouble for about 13 years now and the only one that stood with me was Mark. My older sister Rose lives in the same complex as we do. I have not talked to her in months. Rose was very mean to me and said to me that she wished I would have a short life. well, I almost did . To tell you the truth my whole family doesnt even believe i have any problems with my heart.I had try calling them and that would just get me more upset. They dont call me at xmas or any other holiday. In matter of fact Mark and I dont even get invited. I spent a couple of holidays in the hospital and didnt get a visitor or even a phone call. Mark says i have to move on without them in my life. Maybe he is right.I dont need the stress that is for sure. I have cried and cried over them and it didnt get me very far. I really dont believe that things will get better with all of them. So, am going to try to move on with out them. With warm thoughts, Trudy

Jump to this post

@cherriann, Thank you for your prayers and understanding. MY husband Mark said almost the same thing to me the other day.I guess I have been holding on for to long for them to come around. Am trying my best to let things go and it is getting better everyday that goes by. Thanks again for the prayers. Trudy

REPLY

Hello- I feel so sad to hear so many stories of family members ignoring other family members who are ill. Family dynamics are so complex and when there are serious issues it's difficult to discern the dilemma like the chicken and egg one. I think that no matter who hurt who we all have to take care of anyone who is in a bad place. But if that's really not possible, for whatever reason, than we really do have to step back and try to let the anger, sadness and loneliness go. I've had to do this with my twin sister. Some people are just toxic to be around and cause a lot of pain, both in memories or lack of caring. I think that we have to find substitutes. I hope all of you will find better solutions and substitutions. They certainly can be life savers.

Liked by badboys1965

REPLY
@oregongirl

I can hardly stand to listen to the evil in this world. Rosanna, you need to find a church. The church family will help you if you find a TRUE believers church. I will pray for you Rosanna

Jump to this post

Church is not the answer for all people. I find prayers very calming and soothing.

REPLY
@badboys1965

Hi, I am new to this group and would like too tell you about Family. My name is Trudy, am 46 years old and i have heart disease with a pace maker. A couple a months ago I was hospitalized for having a staff infection. I was in the hospital for 32 days. In and out of the ICU units and almost died. How should i put this, my family could of cared less. I dont get any phone calls to even see how am doing at home or if i could use some help. Thank god for my husband Mark for always being there. I have three brothers and three sisters and none of them even care, I had heart trouble for about 13 years now and the only one that stood with me was Mark. My older sister Rose lives in the same complex as we do. I have not talked to her in months. Rose was very mean to me and said to me that she wished I would have a short life. well, I almost did . To tell you the truth my whole family doesnt even believe i have any problems with my heart.I had try calling them and that would just get me more upset. They dont call me at xmas or any other holiday. In matter of fact Mark and I dont even get invited. I spent a couple of holidays in the hospital and didnt get a visitor or even a phone call. Mark says i have to move on without them in my life. Maybe he is right.I dont need the stress that is for sure. I have cried and cried over them and it didnt get me very far. I really dont believe that things will get better with all of them. So, am going to try to move on with out them. With warm thoughts, Trudy

Jump to this post

Yes, loneliness is very sad. If you can, there are many self-help groups and fun non-stressful activities that may be nearby. I, too, suffer from loneliness at times but I distract myself by watching learning programs on tv or just some stupid-like cartoon! That is not to say you're wallowing in despair. I can honestly say I'm not a "joiner" for all things.

REPLY
Please login or register to post a reply.