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How to Deal with Relatives

Discussion in 'Lifestyle Management' started by Mya Symons, Jul 18, 2010.

  1. Mya Symons

    Mya Symons Mya Symons

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    My mother died 10 years ago, before I became really ill. I have two sisters. My sisters and my father deal with my illness by ignoring me when I talk about it. For example, if I talk to them on the phone and happen to mention something about it, I get the response "I have to go now." If I contact them via e-mail or a social network and mention anything, it just gets ignored. My father is a recovering alcoholic who attends AA. I quit drinking about 10 years ago, but do not attend AA. The only time my father brings up the subject of my illness is to mention that I should not take any medication, especially any pain killers (I take tramadol). I rarely talked about CFS/FMS in the first place. Now, I have gotten to the point where I will not mention it to them at all. Their contact with me has become less and less. My uncle passed away a few months ago. My father called me after not talking to me for 6 months and I felt like he wanted me to listen and "feel sorry for him." I did not have it in me. I could not be a shoulder to lean on to someone who is not supportive of me. My father has also talked alot about my Aunt, who has rheumatoid arthritis and how bad he feels for her that she could not work, yet expects me to work full time. (I currently work 22 hours a week). I have tried to send them articles about CFS and FMS, but they ignore them.

    I am lucky in the sense that my husband is very supportive and I have a good friend (my sister-in-law) who is also very supporive. (My husband and my sister-in-law also have CFS/FMS). My 19 year old daughter is also very supportive.

    I am feeling as if I need to cut my father and sisters out of my life because I end up feeling bad every time I talk to them. I was hoping that others could share their stories about their dealings with relatives and how they deal with it.
     
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    "I am feeling as if I need to cut my father and sisters out of my life because I end up feeling bad every time I talk to them. I was hoping that others could share their stories about their dealings with relatives and how they deal with it."

    Might be the best thing to do. Especially if you do not get anything out of the relationship and it only causes you grief and/or sucks your energy! I think you should try to avoid all negative things, and it seems that you do not get anything postive from your interactions with your family.

    My father does not get my illness either and I don't have the energy to explain, besides I think he is going senile or at least that is what my mother thinks. I am not so sure, but have no reason to doubt my mother, since she lives with him and deals with people in that situation. He is old school, and not very well educated to say the least, not much compassion. He will be 70 in a month, so he should be dying soon, he said he didn't want to live past 70, so?!

    My mother has compassion and has some understanding, but not really sure what she understands. I would say count your blessings, at least you have a husband and supportive sister in law also. I would say stay postive, you need to have hope that things will get better soon!

    Sorry to hear about your situation!

    I have been sick for over 7 years know, so I am learning to deal with the losses and let most things just roll off my back!
     
  3. ZoeHines

    ZoeHines

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    Family are the most hurtful people. I have had CFS for 10 years, since I was 15. My sister in law, psychologist, managed to convince my whole family (bar my mum) that it's all in my head, she says I have done nothing with my life, and I never will. I now have no contact with most of my family. It is very very lonely, but better than the alternative.
    Look on the bright side, at least you can work 22 hours a week! Most of us just wish we could leave the house. Your husband sounds very supportive, mine seems supportive, but just doesn't want to know.
    I think the only way for you to get on with your life, is to cut those negative people out of it. They don't deserve to know you.
     
  4. Stone

    Stone Senior Member

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    I am the youngest of three female siblings. My oldest sister became ill with CFS at age 27. For almost 10 years I thought she was neurotic. I was a nurse, fully ensconced in the medical profession from a VERY early age. Then at 33, I came down with CFS too. I knew lots of doctors and health professionals who were all stumped. My "neurotic" sister was the ONLY one who kept me sane through the process of finding out what was wrong with me and she was able to predict (to my utter amazement) that each test I was about to have would be negative. I was very ill and desperate, and she now had my attention and I finally listened to her. She facilitated my eventual accurate diagnosis of CFS and has been a rock for me over the last 15 years. I feel terrible for the way I regarded her for so long. But truly, this is too hard to believe for 'normals'. I would never have believed it myself had I not experienced it first hand, and maybe we should not be too hard on people who don't get it. Eventually our other sister (sadly) became ill with CFS too and our parents EVEN THEN never did comprehend it. Now our father has gone on to whatever lies ahead in the world to come, but he never did really understand. He used to volunteer to deliver Meals On Wheels to people he didn't know while I (his own daughter 3 miles away) was flat on my back bed-bound for over a year and had to wait for my 12 year old to come home from school to feed me. Once he called me up (about 7 years into my illness) and casually asked how I was. I told him I was feeling pretty bad that day and he said, "Still? You're not better yet?" (like maybe I just decided to go on a 7 year vacation from work as a single mother with two children and no child support). It's just one of those sad facts of life that not everyone understands something as strange as this. My hope is that these days are coming to a close and maybe, just maybe hell might be freezing over. Try to avoid people who drain you and don't worry, people who contribute to your wellbeing will fill their places. No, it won't be the same. Nothing will be the same. That's just the bottom line. The good news is though, that you will not be the same either. In spite of what happens to you in other ways, your spirit will change, your own brand of humanness will change, and more than likely it will change for the better. You will have new sensitivity to others in your position, and the world will be a much improved place because of people like you. May you experience continual growth in your bodily health as well as all aspects of that which makes you wonderful. Start where you are, and as far as it is within your power, bloom where you are planted. "We can do no great things, only small things with great love."--Mother Theresa.
     
  5. sandgroper

    sandgroper

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    west australia
    Adult Children Of Alcoholics

     
  6. Athene

    Athene ihateticks.me

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    Mya, I don't know what advice to give, but I just wanted to say I am so sorry to hear you are having to deal with this.

    I am lucky to have a super supportive family, though my in-laws are fairly moronic about it all, and I had to carry out a major "attitude adjustment and re-education" programme on my husband (Now a totally reformed character) so I understand how terribly draining this all is. I really hope you can resolve the situation without suffering too much detriment to yourself.

    I'm sending you lots of sympathy and hugs.
    Athene.
     
  7. Mya Symons

    Mya Symons Mya Symons

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    Thank you for all of your replies. It helps the most, I think, to know that there are people going through the same thing.

    PS ZoeHines--Your sister-in-law is a b@#$h! :)
     
  8. Frank

    Frank Senior Member

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    what Mya says!
     
  9. serenity

    serenity Senior Member

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    humn, well - my position is odd as well. i have a family history of alcoholism on my mom's side, so when i got sober 12 years ago everyone was very supportive of that. but this, this has been a real struggle. may aunt who was a nurse, (i have a couple of them actually) sort of kind of gets it, but again - does that meals on wheels thing for others while i sit here sick. charity begins at home, not so much. haha! she would do it if i asked tho, i just don't. my mom is still very active with helping alcoholics, but this? not a chance. she is trying tho, which is a big change for her. on my dad's side, bi-polar disorder runs rampant. my dad has it, so he's semi supportive & understanding of what an illness can do to your life. his siblings tho, not so much. i'm pretty distant from them, tho they are family. the in laws only got told about a year ago. we'll see how they do, i have not been to see them since my husband told them about my situation.
     
  10. muffin

    muffin Senior Member

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    My father was a doctor. Now, would you not think that HE would have tried to figure out what was wrong with me? NO! Even asked my husband after I had been sick for 7 years why his daughter (me) was sleeping 14 hours a day when we were home visiting. Husband shocked by this question. My mother still has no clue what I have after 16 years. None. Has never spent a minute on the Internet looking to see what I have. Siblings don't care or assume I got burned out but refuse to believe me that THEY too could be in my position due to genetics, stress, etc.

    So, I ignore their stupid comments. And I sleep when I want/need to regardless of what family thing is going on. At least my wonderful husband tried and did read Osler's Web to get the story. Thanks to Hillary Johnson I had a well informed husband when first sick. So, I had my husband and my internist to help me stay alive and afloat.

    CFIDS is the only disease I have heard of where family members get so nasty and unsupportive. Not even the addictions create the same sort of anger at the "sick person". Amazes me...
     
  11. bakercape

    bakercape Senior Member

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    I've often thought

    If I was a drug addict or an alchoholic I might have a loving family do an intervention. They would all gather and lend me support and say they just want to do whateever they can to help me get well.
    Just imagine if we got that kind of support from our families. Wouldn't it be wonderful.
     
  12. zoe.a.m.

    zoe.a.m. Senior Member

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    Olympic Peninsula, Washington
    I don't have a clue why this illness seems to fit into no category as far as other people understanding it.

    I hope I'm not hijacking the thread, but this topic has been on my mind constantly since I was told a couple of days ago that my parents are moving 3000 miles away. Last week I found out my brother was moving to Canada and my sister to California. It's hardly been a supportive family atmosphere (my brother still thinks this is a matter of "pushing through" and my sister has decided that I "don't want to get well"), but my parents have actually been reliable about helping with food, prescriptions and bringing me to doctor's appointments which are a few hours away.

    I filed for a hearing for disability in February and now have to wait until around Jan 2012 for the hearing. It's been stressful to say the least, but it got me a lot of referrals from my local doctor and I've been feeling slightly hopeful that my quality of life might improve a little with time. Suddenly though, I'm facing a situation where I have no help, no rides to appt.s and testing (I've got a fair number of tests coming up that require sedation). I was totally shocked when I got the news because it hadn't occurred to me that anyone was going to make any major changes in the time left before my hearing. I did make this comment when I got this news, and since then, it's been phone calls and emails from my family calling me a narcissist, telling me to get a life, be more independent, look forward and be understanding that everyone has exciting changes going on and needs to strike out. I've been criticized a lot for not having a better social network. It's quite true that I haven't got anyone I can depend on where I live and it's been tough since I moved here to be closer to family so as to get help (at their request) and so have only been sick since I have lived here and have heard a lot of rumors about myself (schizophrenia and bipolar); it's a small town. I was engaged but was left because of being ill and have no partner, no best friend, etc.

    I moved across the US a few years before I got sick and made a lot of friends but they fell away within a few months of getting sick and the last stopped calling and emailing about 6 yrs in. I tried hard to keep my older friendships intact, but I couldn't fly back to visit and so, in 10 years, they fell by the wayside. It's been a horrendous few days and I do feel like I'm being left behind. I have been having trouble comprehending why and how someone would do this to a family member, though I know my family is not terribly sympathetic, surely even they can see that leaving someone with no help while they go through the process of disability and a hearing is rough. To me, it's unthinkable to do that to someone. At first I felt like I just didn't they understood the position it would put me in, but I'm starting to realize that I think they do and they really just want to get away from "the sickness."

    My relationship with my parents has been strained, and if I was well I doubt I'd have much contact with them, but things improved a lot after the Whittemore-Peterson article was published and I've actually felt (and had) some support since then and an actual family. Am I taking this all too personally? Am I missing something? I appreciate any feedback...
     
  13. serenity

    serenity Senior Member

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    i don't know if i have any feedback Zoe, just sympathy. what a horrible situation for you. i have no idea why people seem to dislike us so much either. i dunno what we did to deserve the kind of judgement, criticism & non-supportiveness we get. it's not our fault we are sick, & we certainly wish we weren't.
     
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I hear you, I have been struggling and suffering for over 7 years now, and it seems that my family and friends are just starting to understand!

    Perhaps it is because they are seeing less and less of me every year, and my relationship, work and financial issues?!

    Heaven knows I swamp them with emails in regards to my illness!
     
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Perhaps you are taking it too personally, but we are human and I think I would feel the same way! Can you talk to a knowledgable physchologist? I talked to one when I was hit with a major depression due to a work situation. I was living with my GF and she totally didn't get it. I would send her a lot of emails, along with some family members and friends. She told me that she would not read the emails but I would watch and see her game for hours upon hours! So I know what her priorities are!

    She moved out at the beginning of the year, and it has affected me financially, but freeing spiritually, she was/is rather crabby, she might be bipolar, not sure. she toke some physch meds and I asked her if she was bipolar, but she did not answer, whatever. I have been thru so much now, that it takes a lot to really get to me! 7 yeears of hell and counting!!

    Are there any support groups around? perhaps with the XMRV things, groups have been resurrected?

    Can you do the exercise testing at Pacific Fatigue lab to show disabled you are?
     
  16. zoe.a.m.

    zoe.a.m. Senior Member

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    Olympic Peninsula, Washington
    Thank you for your words Serenity, I honestly do need people to tell me that I'm not crazy, this isn't normal and it's not okay, even if it doesn't change a thing. Being isolated and invisible is more than anyone should have to go through, or at least it should not go on for longer than a year or two.

    Like you said ggingues, I felt some accomplishment when it seemed my family turned a corner and really got how sick I am and the seriousness of the illness, and yet it doesn't change their behavior toward me. There is no confusion that they know the severity and the prognosis. Somehow things went backwards, and I'd fought for so long and finally gotten a little peace and didn't foresee being put on trial again. It's insane to me that when someone is trying to explain their conduct, they go backwards and make some comment about not knowing how serious it was 5 years ago! How is bad info in the past an excuse for anything now?

    The closest support groups are in Seattle, which is 2.5 hrs from me. That's part of why this is tough--it's not a matter of just putting myself out there.
     
  17. silicon

    silicon Senior Member

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    I’m sorry to hear about this very difficult and painful situation Zoe. It’s very sad that so many family members cannot understand this illness, and insist on using insulting and dismissive labels. I guess they are in big time denial and don’t want to see your vulnerability, and perhaps their own. I sincerely hope that somehow you are able to find the positive support you deserve…
     
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I thought that might be the case with your location, sorry to hear of your isolation.
     
  19. serenity

    serenity Senior Member

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    you are welcome Zoe, i wish i could offer more. stick around here for support, & hopefully you will find more there as well.
    you are right, it's been long enough - none of us should have to go thru this anymore.
     
  20. camas

    camas Senior Member

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    zoe,

    Words are just so inadequate, but I just wanted to say how sorry I am for your predicament. It's just terribly unfair. I wish there was something we could do or say to make things easier for you.
     

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