Disbelieving Siblings

[blazes]

Hi
Well, I just have to vent a little bit. I know its something that you have all gone through and something that you have all heard before. I have always been open about my illness. I'll answer your questions. If you want to know what's going on with me, ask. We were at a function for my nieces (out of state for me) and I had done way too much. I started getting that "acting drunk and drugged out" persona. You know the one....stumbling, not making sense, off in nowhere land. One of my sisters (who has been told this MANY TIMES) said to me "We have GOT to get you off of those narcotics!". I looked at her like she had two heads because, while I knew what she was saying and how to respond the words just wouldn't come forth. A little later while we were having dinner I was picking at my plate and she said "What is WRONG with you?". My other two sisters then chimed in. Luckily my mother was there to help out with the explanations. By then I was shaking and sweating. I needed to go lay down. I excused myself and went to a guest room until we could go back to the hotel.

When I found out I got my hearing date for disability through Social Security I never said anything to them. About 10 days before one of my sisters came over and I let it slip. She just looked at me and kinda gave me the "oh brother, just what you need, another reason to lay around" look.

It hurts me terribly. I hear of things they are going off to do together and they never even mention inviting me -- not that I could go or would go because of their attitude. It just hurts that they don't even consider doing something that maybe I CAN do.

They could say, meet here at the house, grab a movie, make some dinner and all just hang out. But everything with them is high octane. It would be a cookout for 48 people by the time they're done.

Sorry ya'll. I just am sad about this. I am lucky to have a super awesome sister-in-law who does just come over and hang out. She will invite me out to eat but understands when I can't go. So I do count my blessings.

I just needed to vent with people who would really get it.

Thanks ya'll!

 

[heapsreal]

I feel for you. Im going through this as we speak or type. Last text message i got was, then if u dont want anything to do with us then we wont bother you. my previous text basically said my immune system is stuffed, i have now dropped back to part time and cant afford to go out for dinner and if i did i couldnt cause i feel to sick. Well there about to get a 3 page email on cfs and if they dont get it, well i cant do anymore. i havent ever really told them i have cfs but hinted enough things i thought they would have realised something. now i have to try and justify myself to them, i struggle to justify it to myself. Sorry to hear your having the same problems.

cheers!!!

 

[filfla4]

Same here For many years my sibblings just didn't get it and really gave me a hard time. I recently passed on some of my test results from KDM so perhaps they can see hard evidence of what is going on. They have just become silent now. They don't criticise but they still don't offer any support. In the last couple of days I've had a less than pleasant exchange of emails with an old friend who simply doesn't get it at all. On top of everything we go through this aspect is just so difficult to deal with.

If it's any consolation, you're not alone Blazes

 

[Boule de feu]

I think what your family is lacking is a good explanation of what ME/CFS and the symptoms you have.

My best line is : YOU CAN'T CURE WHAT I HAVE, but it is easy to cure IGNORANCE.

I know they are your family, but you'll have to come to terms with (eventually!) not seeing some of them anymore OR seeing less and less of them.
The stress it puts on you is not healthy. I decided to isolate myself because I could not take the pressure anymore.
I don't feel better or worse about it. It is a decision I had to take, that's all. However, sometimes I DO feel awful about it (both my parents are dying from liver cancer and they don't have long to live) and I am wondering if I will feel guilty after they are gone. But, so far, my life has been less eventful which is a good thing. BEST OF LUCK TO YOU! =-) I know it is not easy. =-(

 

[heapsreal]

I just sent them a 2 page email of my history of cfs explainging how i feel, got in about my blood tests mentioned and dropped as a possible cause retroviral cause and about how i cope and the things i now cant do. would luv to print it here but wont but might pm someone if the request it and it may help them with a letter to your family, its like coming out i suppose, how are they going to react, will they think we are crazy and ignore us or what???

 

[Nielk]

Hi
Well, I just have to vent a little bit. I know its something that you have all gone through and something that you have all heard before. I have always been open about my illness. I'll answer your questions. If you want to know what's going on with me, ask. We were at a function for my nieces (out of state for me) and I had done way too much. I started getting that "acting drunk and drugged out" persona. You know the one....stumbling, not making sense, off in nowhere land. One of my sisters (who has been told this MANY TIMES) said to me "We have GOT to get you off of those narcotics!". I looked at her like she had two heads because, while I knew what she was saying and how to respond the words just wouldn't come forth. A little later while we were having dinner I was picking at my plate and she said "What is WRONG with you?". My other two sisters then chimed in. Luckily my mother was there to help out with the explanations. By then I was shaking and sweating. I needed to go lay down. I excused myself and went to a guest room until we could go back to the hotel.

When I found out I got my hearing date for disability through Social Security I never said anything to them. About 10 days before one of my sisters came over and I let it slip. She just looked at me and kinda gave me the "oh brother, just what you need, another reason to lay around" look.

It hurts me terribly. I hear of things they are going off to do together and they never even mention inviting me -- not that I could go or would go because of their attitude. It just hurts that they don't even consider doing something that maybe I CAN do.

They could say, meet here at the house, grab a movie, make some dinner and all just hang out. But everything with them is high octane. It would be a cookout for 48 people by the time they're done.

Sorry ya'll. I just am sad about this. I am lucky to have a super awesome sister-in-law who does just come over and hang out. She will invite me out to eat but understands when I can't go. So I do count my blessings.

I just needed to vent with people who would really get it.

Thanks ya'll!

I'm so sorry Blazes with this stressful situation you have with your sisters.
I can definitely relate and understand how you feel.
It's painful enough when the ignorance comes from strangers but, when it comes from sisters it is very painful and adds so much stress to your life which is so draining.

I'm actually surprised that it's coming from your sisters. They have known you all your life. They knew you before you became ill and know you're just not "the lazy type" or "hypochondriac". Did you get along with them before? It might also be that it's painful for them to see you sick and as a defense mechanism, subconsciously in their mind they try to ignore the reality of your situation.
Personally, I am not immune to this situation but, have more problems with in-law relatives and I'm thinking that it is because they never knew me when I was well, worked full time, took care of children and household and in general was very active.
They did not experience my deterioration, so they might think this is just the way I am.
I have, unfortunately, no good advice for you except to try to inform them about the illness as much as you can.
Maybe you can gift them the book "Chronic Fatigue Syndrome:A Novel by Carolyn T Anderson. It.s an easy read and does a pretty good job depicting what we are going through.
It's interesting that you have such a compassionate, helping sister-in-law. Cherish her relationship. Maybe she and your mother can sit your sisters down and show them how hurtful their behavior is to you.
In any case, I wish you the best of luck!

 

[blazes]

Oh Thank you everybody! Your kind words and advice has helped so much. I've really just accepted the fact that they don't believe I'm sick but there are some days that it just rubs me the wrong way......ok...maybe that's not totally the truth. I've been trying to "be their sister" my entire life. They are my dad's from another marriage. The youngest of the 3 has always been very close. She's the one that made the comment about me being on narcotics. I've explained to them about my condition so many times. I've emailed them information. I think they just don't want to know.

I don't know if its that they are jealous because I was able to spend my entire life, growing up, with our dad....if that's the case.....so did the sister that said I was on too many narcotics.

I think that they have just made up their mind and that's it...even though they've seen the evidence first hand. I just need to learn to deal with it better.

It's things like....this is the same sister that thought I was on too many narcotics (yes...we were close and I think it's her denial that hurts the worst)
1. She gave a Sleep Number bed to one of her friends just because. She knows I spend a lot of time in my 10-year-old bed.
2. She is doing a "benefit" cookbook for a friend who needs her car fixed (asking for recipes from all of us). She hasn't once offered to help my mother who is supporting me (and who raised and adopted her)
3. They're farmers and she sends fresh herbs, fruit and vegetables to all her friends but we haven't received any in years.

Those are just a few examples. My other sister told my daughter that my mom should keep our food separate. My food out one shelf and hers on another. Seriously? She's the one who has to cook for me most of the time anyway!

My other sister is absent most of the time since she lives in another state so we never really hear from her anyway.

My sister-in-law has seen me at my best...my most energetic...and has watched me go through my downfall. I do cherish her. She is the sister I don't really have.

I am sorry that we all have to go through this and it makes us almost reclusive. I have learned though that I cherish the people in my life and that I have been thankful for things that I didn't realize I should be thankful for before when I was too busy to realize it.

Thank you for all your support! You guys rock.....well....we all rock very slowly....lol.
Kimberly

 

[*GG*]

I would say cherish your sister in law, and make like you don't have the other sisters. I have a couple of brothers (not much in common) that I am not close with, but have a couple of male friends that are like brothers to me.

If they don't want to learn about your condition and face the facts, drop them out of your life as much as possible. You don't need the added stress!

Perhaps you can say something about the gifts to others "like I'm glad you did these charitable things for such desperate people(like your living life high on the hog?)" or perhaps it is not worth your energy/breath. I think this illness is like dealing with death, we really do need to grieve our past life (I think I was pretty angry for a couple of years, but luckily I found a pretty good Dr who has given me back some of my (quality of) life), and accept our new reality! Hopefully some good advances will be here in the near future! I remain hopeful, I think you kind

Has your daughter ever known you as a healthy person?

GG (male)

PS All of my siblings and parents know that I am not faking I was doing well and have a good job, just can't earn as much, since I don't work as much! I used to bike at least 20 miles/wk and ate healthy as I knew it (learning more all the time, and wonder if the food system has some blame in my illness). My sister understands the best, I am closest with her and her children.

PSS I had a Neurologist (they don't diagnose/believe in Fibro?) prescribe me some narcotics, it was sending me down a bad path. I saw my good Dr, and he helped put it in perspective, and I quit doing them shortly thereafter.

 

[ixchelkali]

Kimberly, I'm sorry you've had to go through that. You're right that most of us know what it's like. It hurts. It's hard to let go. People don't "get it" and it's hard to understand how they couldn't, and why not; not when they've known you. It's hard to accept that maybe they don't want to get it.

But for your own survival, at some point you have to let it go. It has nothing to do with you and everything to do with them. You can't change them. To continue to try just leads to more hurt. Your job is to go through the grieving for the relationship you wanted that isn't there. It's hard; it hurts. But then you're through it, instead of the ongoing hurt of continuing to hope it will be different, only to be disappointed. But you've had experience with grieving: you've had to grieve for the life you once had.

You probably know all that. One part I stumble over is trying to understand it. How people I've been close to, people who knew me "before," could be like that, I mean. I've come to realize that it's unknowable. Would I do that if I were well and one of them were sick with ME/CFS? I don't know. I hope not, but I've come to think that when we get ill, we enter a different universe. Anyway, that's something else I need to just let go of. I'm working on it.

It's a hard thing that people who are sick and have lost so much have to put up with stuff like that from people who they would expect to support them. But it's been going on since the days of Job. Your sisters are just modern-day versions of Job's comforters, blaming the sufferer for being sick.

You can't change them, but if you can give up all hope that they will behave differently, it will reduce their power to hurt you. Save your psychic energy for people like your sister-in-law; they are worth it.

 

[caledonia]

There is an old saying that I think applies here: "You can lead a horse to water, but you can't make him drink". Your sisters are the horses, and they sure aren't drinking any of that ME/CFS water - lol. So why bother. They aren't ready to hear this information for whatever reason.

I think Ixchelkali nailed it when she said you have to grieve the relationship you thought was there, but isn't.

Yes, and hang onto that sister-in-law - she's golden!

 

[blazes]

Thank you everybody! You're all right. I guess I just needed to hear someone else say that I needed to let go of people who don't support or believe me. I do it in every other aspect of my life. I guess I just wanted to hear someone else tell me that they have had to give up trying to teach unbelieving/unsupportive family members about this illness and move on. Just move on.

Thank you. I will grieve for the sisters I wish I had and in the end will celebrate the sister I have in my brother's wife.

Thank you for always showing support when I need it.

 

[Zavier]

Yes sure and its better to celebrate the miseries and all the happiness with them because you have right to be happy always and make others happy from you. And you are quite good and good in understanding situations.