Helping Family Understand your Automimmune Disease

@badboys 1965 I am so sorry you are going through health struggles and your pain with your family. I know how it feels and can feel your pain. Moving on is hard to do but I hope you find the answers and find some peace. Take care of yourself. Hugs!

@desirea Thank you for your support. Hugs right back at you!!!!

When it comes to family things can be difficult. Moving is no walk in the park either. I am sorry for the difficulties. I was always active and now physically things have gotten to be difficult. The last thing I ever want to be is a burden on any of my family. I believe my adult children are beginning to understand that I cannot do all of the things I once did. It takes time for family members to grasp there is really something wrong. Oft when others are healthy and able to do things it is difficult for them to grasp the pain of another.
I have fibromyalgia-one of those now labeled "invisible illnesses" as well as other chronic stuff. I, fortunately, can still drive even though anything over 20 miles is no longer possible and there are times driving is out of the question.
I think the suggestion of @oregongirl about calling Social Services is a start. It takes some research, etc. One needs to try and become proactive and realize that relying on family/friends for everything may be asking too much.
I can understand your frustration. Mayhap some advocating for yourself by making some phone calls would help you not to feel so helpless. There is help out there and it takes some time to find thus. Wishing you the best.

Thank you @parus

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

@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?

@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

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!

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

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.