I'm mystified by how uncaring my family is. I was dxd with ALS and have been treating it as lyme with abx. So far, I'm doing ok but my legs are getting weaker.
How can my brother and sister and their kids not call and ask how I'm doing? They don't include me or my family in any of their holidays. If they had ALS I would've have helped them. Its so painful and I can't let go of the hurt.
Some people who were adopted search for their birth famiies and here I have a full brother and sister who don't care if I live or die.
How can I let go of this pain?
Posted by Lymetoo (Member # 743) on :
I'm off to bed, but wanted to say .. locate a psychologist and/or minister who can help you through this emotional pain.
You can't do it alone and shouldn't have to. Posted by linky123 (Member # 19974) on :
I'm sorry you have to deal with this. It seems that being afflicted with this disease brings out the worst in some.
When it's family, that makes it even worse.
You have lots of friends here that know what you are dealing with.
Not much I can say except that I understand and will keep you in my prayers.
Take care.
Posted by Rumigirl (Member # 15091) on :
I have been through the same with my family, as have many here---sadly. But Lymetoo is right, you do need the help of a good therapist or minister, along with our support.
Please feel free to cry, yell into a pillow, etc. to feel your feelings about this horrible situation (when it's appropriate to in terms of others around you, of course). I have done plenty of that, and couldn't make it through otherwise. But do heed Lymetoo's advice, this is too much to get through on your own.
And then find a new "family" of people who DO care about you when you are most in need. You will certainly find that here. And if you have a local Lyme Support Group (look on Lymenet to see), that would be ideal. Just not in place of therapy, along with. This is a HUGE pain to feel. Much as I've felt about it plenty, I am still appalled by it. People show their true colors in this situation.
Posted by Lauralyme (Member # 15021) on :
Sadly it is a common phenomenem
It was so shocking to me that my pharmacist stopped and gave me a hug in the middle of the road yet my own brother was not calling and asking me if I am okay.
I know it's hard to but try to put all those negative feelings aside for the moment and focus on regaining your health. You can decide later how you want to deal with your family.
It takes alot of energy to stay angry at someone. This is energy that would be better spent in getting well.
Posted by LymeCFIDSMCS (Member # 13573) on :
My family abandoned me to die when I was in respiratory failure from babesia and had no one to care for me -- they were so brutally uncaring and callous and disturbingly checked out it blew my mind, and seriously endangered my life.
I know how you feel -- to be in a degenerative state and STILL to be rejected by family is just incomprehensible. I feel a lot of pain about it every day.
All I can say is that people are astonishingly limited when it comes to illness. They project all sorts of things onto others rather than deal with their own character deficits. They want to have fun and not think about the seriousness of physical decline and mortality.
Family is supposed to be there in the worst of times. And I think it is very hard for anyone not going through such pain to comprehend how hard it is.
Hold on to what you have, and become your own best cheerleader as much as you can.
Posted by Dekrator48 (Member # 18239) on :
I'm so sorry that you are going through this. It must hurt you so much.
I have found that the best thing to do in any similar situation is to pray for the people who hurt you/me.
Ask God to bless them and to show them how to do His will, etc...pray for all good things.
Then I ask God to help me change my heart so that I can forgive and do His will.
Then continue to be obedient to God in your daily life and God will do His work to rectify this situation in His timing.
Saying a prayer for you. Posted by Dekrator48 (Member # 18239) on :
I also find Joyce Meyer's broadcasts to be very helpful in so many areas of everyday life.
She is a great Bible teacher who shows us how to deal with everyday problems like the one you mentioned.
In the link above, there is a list of programs/topics with dates. At the right of the list, you can scroll down to see all the show titles.
If you scroll down to Mon 4/16 and Tues 4/17, there are shows called "The Forgiveness Test" part 1 and 2.
They are very helpful. Joyce is so real and down to earth.
Also look through the other topics to see what may look interesting and helpful.
I record her shows (from the tv) because they are so good.
I think I am addicted...lol.
Posted by chastain (Member # 34236) on :
I know how painful this is. I have had some amazing support during this whole experience, but I have had some family members and former friends just forget I even exist. I also was abandoned by my not so kind or loving mom when I was 11 before I got sick, so even though I am not unfamiliar with the pain of neglect, it is much harder to cope with people's indifference when you are sick.
I think that you need to find outlets to cope. For me it is writing and spending time with people that do love me unconditionally, like my dad and good friends. It is still a struggle at times and I still have an underlying fear of being abandoned that lives with me every day, but it is much less than it was. Time and patience and persistent pursuit of your own best interests really do heal things to a great degree. I wish you the very best. Jess.
Posted by sixgoofykids (Member # 11141) on :
I experienced a lot of that from extended family, too. I later found out that my mom and sisters even made fun of me behind my back. My son took advantage of the fact that I was sick and never once even offered to get me a glass of water (he was in HS), but the other family members who live here in my house were very supportive.
It doesn't fully make up for those who don't care though.
EFT (tapping) helped me a lot. Or if it's really bad, a therapist is a good idea. You have to remember, it's a deficiency in their character, not yours, that makes them act this way. You can't make people be caring.
Posted by AuntyLynn (Member # 35938) on :
Dekrator48 -
Hey thanks for the Joyce Meyers Link. She is a really good speaker. I used to watch her a lot but gave up my TV 2 years ago... $60 a month for cable just didn't make sense anymore.
Posted by Lymetoo (Member # 743) on :
Also... I have two older brothers who love me very much ...but they never call me. So I decided not to be insulted and just CALL THEM.
We have great talks and both are very supportive. I love them!
So... Call once in awhile and see how it goes! Posted by Dogsandcats (Member # 28544) on :
Some of my family has fun calling my docs quacks.
It bothers me, but if I don't talk to them about my docs, we don't have any conflict.
I do back what others have said, talk with your minister or a counselor. Gives you someone to talk to hopefully unbiased.
Posted by Dekrator48 (Member # 18239) on :
You're welcome, AuntyLynn!!
Her broadcasts are also available for free on iTunes. You can download them and listen anytime, or burn them on CD's to listen to.
Posted by 2young2dieMom (Member # 25434) on :
thank you for all the suggestions and caring. a dear friend told me recently that maybe my sister and brother do love me but are limited in what they can do for me.
i forget that they came from the same dysfunctional family that I came from. They are both 14 years older and I grew up thinking of them more as parents.
i was born into a situation where i was unwanted. i really wish I had been adopted into loving family by people who would have cared about me from day one.
fortunately, I do have a loving husband and son so I try to focus on my blessings. I appreciate your kind words.
Posted by chastain (Member # 34236) on :
2young2die, I think seeing some people as limited in their capacity to love is a valuable thing. I think people have different levels of what i like to call emotional resilience. Some people can survive trauma with their hearts intact and with more love than bitterness, as we both seem to have, and some simply can't.
I was born into a situation where with one parent i was MOST DEFINITELY unwanted, but luckily I had a father who helped to counterbalance the abuse by showing me unconditional love. When my mom abandoned the family it was actually a blessing in some ways cuz the abuse stopped.
i I have wanted to be adopted most of my life too but I have learned since that even in the most loving families there can be conflicts and struggles we dont even know about.
I think seeing that you have a loving husband and son is the key to making you feel better about this situation. Look at it this way, with yr son you have the opportunity to forge a new path for someone, a loving future devoid of the pain and neglect that you suffered. I wish you the very best with everything. Jess.
Posted by linky123 (Member # 19974) on :
I think the whole thing comes down to what a person's expectations are.
Family usually knows us best. So, when we are unable to do the things we used to do, ie, taking care of others, cooking, cleaning, basic needs, it upsets the cookie cart.
Some react out of fear, anger, whatever, because things are different and they don't like it.
Chronic illness messes up the status quo in a big way.
Some adapt better than others. My mom used to say she became so much more empathetic after she had dealt with a serious illness herself.
She passed away before I was diagnosed, but she instinctively knew that something wasn't right. When I would crash, she would give me my space, always supportive.
I miss her so much; she got it when no one else did.
Posted by lpkayak (Member # 5230) on :
i go thru this too. so hard. we are here and cousling might help too
Posted by nonna05 (Member # 33557) on :
Six..what is this EFT tapping,,I think I saw it mentioned twice.
Tapping eyebrows,making noise through mouth from head and saying confirming thoughts?? With colored glasses?
Lord knows I'm one that's missing support.
Yep!! Grandkids aren't coming...... Mom and brother died and most "friends " forget about it,,
One hang's in there and calls once in awhile..
It makes me want to kick myself in the A__ for every hug my Mom needed and I rushed,,,She got them, but I was her only support and running a business, raising child by myself ,she didn't get what she needed....
Tried many avenues to help her,, COPD and emotions,,,but at the end, it was her with a very" STRANGE WHERE HAS THIS WOMAN BEEN INFECTION" In ER and ICU,,, makes you wonder,,,,,
I'd have to find a affordable counselor to come in at this point.
If I//When I get well I will give lots more hugs.
Meals .......rides and see those triplets Posted by 2young2dieMom (Member # 25434) on :
Update: finally told my sister how I really felt and she didn't like it. It was a gruelling hour long visit and I don't know if I'll see much of her again.
She doesn't understand but it helped me to explain how much I needed her when I was a kid and how it is similar now. She just isn't interested in being there for me. All she can do it talk about all the trips she's been on and all the accomplishments her kids have done. All things that are more important than being around when I need her.
I don't think things will ever be the same between us but it does make me feel better that I finally spoke my mind. She did seem genuinely sad when I told her how I felt. I know she cares alittle bit. Maybe that's enough.
Posted by Lauralyme (Member # 15021) on :
That's good that you did that. Maybe she'll come around
I know very well what the hurt feels like.
I don't know if things can ever be the same with my brother and I, it's just too much water under the bridge.
Accepting that that's just the way it is makes me feel better.
Posted by 2young2dieMom (Member # 25434) on :
Yes, there is definately a certain kind of peace that comes with expressing yourself, even if it doesn't change the situation.
Posted by randibear (Member # 11290) on :
my family is totally non-supportive.
sooo, i'm going to stop calling them and see how long it takes for one of them to call me.
they have never, ever called me..
i'll wait them out.
i'm tired of always calling and getting rebuffed. like ya'll have said, better to avoid toxic people.
Posted by nonna05 (Member # 33557) on :
Maybe we just seem toxic to them...I was telling a friend the other day..One of the couple left.
That I'm sorry about our conversations revolving around my illness,treatment and why I'm not better yet,,,I do try to remember to ask about her life and issues going on..
SIX,, what is tapping..??????
It's pretty sad when you go to give blood for labs and the lab tech, stops to give you a hug.
It felt so good, but weird ,because its been so long since I've had one.
Since the triplets left last year..
I called her later and thanked her..she is sick with Lyme also...
This stuff ,LD,is so mean..and all the effort love and whatever you put into your family and friends all those years before...I think I'm in shock sometimes .
Or I start to blame myself ,like I did something wrong.. Posted by AuntyLynn (Member # 35938) on :
Some people just don't have the capacity for empathy - or charity.
The sooner you can come to terms with that fact, the sooner you will start making effective responses. My mistake was to have glossed over the evidence for so long.
Good for you 2young. You made her feel SOMETHING! Most of these folks are content to go through life like robots. They measure their success by the size of their houses or bank accounts, or their kid's accomplishments... they are unaware that there could possibly be another purpose to life.
That just does not compute.
I'm reminded of Dorothy, knocking on the Tin Man's chest ... and hearing an echo in response.
Posted by Dogsandcats (Member # 28544) on :
Maybe when you feel better, counseling will help. That is a huge hole in your growing up years - not feeling wanted.
The love your hubby gives you now is great, but there is still a hole.
I dunno, some people seem to be able to heal on their own. Prayer helped me. But counseling made me aware of how my life was impacted by my growing up years. How I react, how I love, etc.
Just an idea....it was amazing how the years I really don't remember much of impacted my adult life.
Good news is God loves me just as i am!!
Posted by WheelWatcher (Member # 34223) on :
Im so glad you told your sister how you felt! You stood up and tried to get your needs met... That is all you can do, we cant control how people will choose to react.
I really do believe that the family we find and choose for ourselves in life is more powerful than the family we happen to have been born with. Sometimes a person can belong to both categories, but for some people, family of origin only causes pain and suffering, and hinders healing.
We all can choose who we want in our families, and who we do not want. If someone does not want to be included in our lives, then it hurts us but better to be dumped now rather than really be in a situation where you are depending on that person and have them dump you then and cause a big catastrophe.
That is how i try to look at it to make me feel better
Posted by twicebitten (Member # 5412) on :
I'm so sorry. I know the pain. Fortunately, my family is pretty ok with my illness at this point, but it wasn't always so.
As you are trying to find answers and trying treatment options they don't feel what you do, or have the knowledge of your body that you do.
It can be scary for them, and they may not agree with all your treatment decisions either.
I'm not certainly taking up for them, there is no excuse for family not to care and support you. I have often wondered how they must think to behave the way they do.??
Anyway, knowing you're not alone is a help, but I wish I could give you more, I haven't figured it all out either. With the family that obviously has issues with my decisions, I just try to talk about other things with them. It's all I know to do.
Wishing the best for you, physically, emotionally and spiritually! God Bless
Posted by 2young2dieMom (Member # 25434) on :
Dealing with my ALS diagnosis has been a nightmare for the past few years. It brought back all those feelings of being unwanted and abandoned in my childhood.
I still don't know if I have ALS but I definately have FL1953. None of the drugs seem to be helping tho.
I just can't get over that my own sister doesn't care if I live or die. I feel like I'm a broken record sometimes, replaying the same scratch and hurting again and again.
Religion hasn't helped. My dad was a Lutheran minister who threatened to kill me and my mom before he hanged himself when I was 12. My sister is currently married to a Lutheran minister.
They have substituted their work (church) for their families of origin. Maybe I remind my sister of too much pain. When I asked her how her childhood was she said she didn't remember anything before high school. wow. Wish I could forget her.
Posted by lpkayak (Member # 5230) on :
are yo familiar with the connection between statins and mitochondrial(als like) illness?
there are herbal protocols that help sx and hopefully progression
one major supp is coq10-lots of it. if i dont get it i cant walk. if i do, i can.
i can point you to readings on this or you can search als, mitochondrial disease, statins on here or net
Posted by Tincup (Member # 5829) on :
Goofy said.. "You have to remember, it's a deficiency in their character, not yours, that makes them act this way. You can't make people be caring."
I agree 100%. And I'll add....
You can't fix stupid.
Hit the DELETE button when ever the thoughts you are having now come in your mind.
You don't need people making you feel bad. You are quite capable of feeling bad on your own. At least give yourself the right to feel bad when YOU want and not when others do that to you.
Posted by Lymetoo (Member # 743) on :
One thing really good about Joyce Meyer is that she went through a LOT of pain herself. She has been there and she knows how to help those who are suffering.
She has great lectures.
I hope you and your sister will be fine now that the air is clear!
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