Extreme Measures: Can one sue their family of origin?

[zoe.a.m.]

Part of me hopes that I won't find anyone with a similar story, and part of me hopes someone has been through this.

This past year finally got me to the "officially disabled" realm, but left me with a grand total of $7004/yr. I have relied on my brother's and his wife's support for my medical care, except the one remaining doctor who takes medicare. For ten years, they have covered most of what I could not pay for. In the past two years, I have fought hard for an increase in health, while also dealing with being totally ostracized by my family (except for the financial interactions noted above). All of my family members have moved to "pursue exciting projects" (this was emailed to my PCP when she emailed them to ask/state that I needed a part-time care taker with no one within 1500 miles).

I recently managed to get every health-care person I work with to advocate on my behalf for immediate help (the financial support I've received has made me unable to get SSI and DSHS assistance--as small as those are). I, again, signed releases for all treating practitioners, the last being a specialist in CFS advocating for immediate assistance for me and safe living quarters (severe MCS).

To my dismay, I received a letter today stating that they (family) still feel my problem is fundamentally mental and stating that they are going to lower their support substantially, so that I will only be able to afford either supplements or acupuncture. Goodbye CFS doctor, compounded IM injections, many lab tests, and the much-needed part-time caretaker.

I have tried counseling, mediation (none would enter, though brother recently said yes to mediation but only for personal discussions, no discussion of support), as well as having doctors write letters and speak to them on the phone.

I am determined not to give up the small gains I've made and I know what has caused them and am now facing losing almost all of the health care that has allowed for them. My parents have money and have helped me with about $500 over 10+ years. My brother and his wife are millionaires--to my surprise. I have no extended family that I know of short of one uncle dying of Parkinson's.

Is there any possibility of legal action? Can a case be made for having health-care needs met (I'm not talking about anything excessive here at all) as a disabled person by family members with the ability to help?

I have suffered physical, emotional and psychological abuse from my parents mostly, and other family members on occasion. I have begged and borrowed and tolerated what I could so that I've had a place to live and doctors to help. Now, I have nothing much to lose and I find I just cannot take it anymore. If they were emotionally involved in my life at all or supportive then, well, things probably would not have gotten this bad, or I was willing to accept the necessary bullshit to keep fighting, but now I have neither. The government would be the next place to go, but I don't need to tell anyone the state of Medicare, SSI, etc. I'm sure.

Can anyone relate or give advice?

 

[WillowJ]

zoe, I am sorry to hear this, it sounds like a lot of hurt. I would guess there are many others in a similar situation.

I cannot think of any advice right now, except to consult a disability attorney (they might be able to tell you whether you had any legal remedy with your family, but as long as you want to make your own decisions I think probably you may not have legal recourse--of course an attorney would know better). I think it's very sad that they don't listen to your doctors.

I think the tide is turning and someday not too very long from now your family will understand you have a medical disease, but you need help now.

Sending hugs

 

[currer]

With a bit of luck evidence for a physical origin of our disorder should emerge soon. This may help you heal the misunderstanding with your family, so dont take a legal route yet......Keep an eye on this site.

 

[maddietod]

I'm not a lawyer, but I don't think an adult can sue family members for support. As your economic situation is turning dire, I would say start the hunt for money immediately. I bet you'll get lots of help here, from people who have navigated the government obstacle course.

I'm very sorry that you're going through this horrible time.

 

[leela]

So sorry you're going through this, zoe. Too many of us know these awful frontiers.

I have no legal knowledge, but I too suspect you don't have any rights to sue for support.
Your best bet would be to pursue every possible avenue of social services etc.

Also, perhaps the new ICC along with documents from your doctors, and a clear, humble letter to your parents that spells out your
expenses, useful treatments, and budget, perhaps they might respond unexpectedly?

Your family, if well off, has probably never considered the rapid unravelling of every aspect of life when one's credit defaults or you can't pay your rent---everything goes downhill from there. They likely don't remember what it feels like to worry about that teetering balance in the bank account (if ever they had.) Sometimes a gentle clear reminder can help.

I wish I had better things to say, or better yet, a cure for this awful disease that strikes every aspect of our lives!

Lots of hugs and sincere wishes that you get the support and love you need.

 

[Mya Symons]

oops. This doesn't apply.

 

[markmc20001]

Sorry to hear your problems. I think it is very generous that your family has done so much for you, and is still willing to do more.

It's very common for people to not understand our illness. In fact, it might be a protective mechanism that allows them to deal with us. People are strange creatures!

I know everybody can't grasp an invisable illness, especially after how the media and CDC have brain washed everybody about our disease for so long.

I don't think I would try and sue. I would let the science work itself out, and let them deal with it anyway that works for them.

You could even let them continue paying for your supplements or acupuncture. Doesn't sound like a bad deal to me! Could be always be worse! They may quit paying all together if you sue them and loose. You could loose a relationship too.

I would also consider trying to understand their position also. Even if they have a lot of material things, like a nice house or small business. It is likely their house has lost value, business has slowed down given the way the economy has been going. That could be making them feel a little less optimistic about their future.

Hang in there! Should be an exciting couple of years for research!

 

[zoe.a.m.]

Thank you for the responses.
There is no convincing these family members that I am anything other than a truly-sophisticated malingerer, I was told this by one of my doctors. Research is not of interest, nor advocacy groups, nor even specific medical opinions. Interestingly, when a provider contacts them (as they require regularly, as well as psychiatric evaluations every couple of years), the response it to go at it as a mental illness even harder, almost as though they don't think the doctor took notes about the conversation or that I don't know what was said. They have systematically bullied me for years and threatened every possible outcome if I breathe a word of things to anyone (other than on the internet, though I might consider changing my username).

I suspect the CFS expert told them that it was very much not psychological and should be taken very seriously, at which point they made a decision to take away support so that it's no longer possible for me to see this CFS doctor.

Honestly, they spend more on wine (I wish I were joking) then on my care annually. It's not a matter of means, though I certainly wish it was.

 

[currer]

ME/CFS frequently leads to problems with family. The stigma from this illness has an impact equal to the illness itself, I think.

You do not say how old you are but it sounds to me as if you are having trouble on your part in seeing yourself as separate from your family.
If they do not want to take responsibility for you any more, you may find you are psychologically healthier and happier going it alone, even if you are left poor.

You may get some help and support from your local CFS sufferers group. There will be a lot of experience and expertise and support there to compensate for the lack of help from your family.

 

[leela]

I'm so sorry, zoe. Unfortunately what you describe sounds like there is a strong component of deep cultural conditioning.

In my experience living in an asian community there is a strong thread (rope, actually) in many asian cultures of shame around illness and even injury, and the tendency to blame the patient for it. It's the bootstrap theory, only worse, because the whole family buys into feeling shamed if your bootstraps are broken. It's a form of collective craziness.

What a horrible Catch-22 if they take away support for the only doctors who can help you. Maybe you can work it to your advantage by saying you can only get better if you go to doctors who you believe can help you in your twisted psychiatrically disordered mind

It sounds like there is some gray area here, though; they do seem genuinely caring in some part of themselves, and truly wish for your return to health whatever their beliefs or motivations. The fact that you are seeing KdM so far away is nice evidence of this. Perhaps you can focus on this, on the caring part of them, and give them more and more feedback about any progress you are making--however subtle--so that they can feel like they are getting a return on their investment not just financial, but in the return, however slow, of their progeny to a state of well-being.

Any good news after your appointment? We like to hear that too :victory:

Wishing you all the very best, in every way

 

[lucy]

Even though you have no money to waste, maybe making them a gift of a book about ME would be an idea. Tell them you want them to have it as a thanks for all what they have helped you with. Can others advise, what would be the best book giving most information about ME for families and close people to understand better what is going on in the world with ME? At least something that sheds some light that in the world there are thousands of ill people like you, that they are also fighting same battles and same pains.

Otherwise very sorry to hear you have to endure such attitudes.

 

[maddietod]

I think the idea of a gift is brilliant - generous and disarming. A thank-you for all of the support they've given you. I wonder if a book teaching them about ME might be seen as manipulative? I like gifts that I would have bought for myself if I'd seen them first.

I send beautiful, unusual cards to my mom. They're hard to find, so she appreciates the effort. She loves getting mail that's not bills. And I always thank her for some specific way she's been good to me - I keep it all about her.

Leela's comment about your 'twisted psychiatrically disordered mind' made me wonder if you could USE their bias. Please don't anybody kill me, but what if the doctor you like put you on a very low dose of wellbutrin? And you told your parents s/he talked you into trying it out...as a PART of your program? You have to be monitored by a doctor if you're taking it, so..... Then who would ever know when you go off it because it's not helping? It might buy you some time.

Madie

 

[zoe.a.m.]

Lots of good ideas and they've all been tried... even the low dose of Wellbutrin! (Which was disastrous). The last 3 psych evals ended in "No, given your reactions to what you've tried (in miniscule doses) and your medical illness, there's nothing we'll prescribe." They stick fairly well to the "first do no harm" principle, though I certainly know many do not.

They actually gifted me with CFS books! I can't even follow what they outline.

Leela,
that is a very accurate description of the bootstraps/broken bootstraps analogy. It is a form of collective craziness.

They've tried and tried the psych "defense" but they can't even get anyone who's seen me to back them up--only "experts" they speak to who have not seen my records nor have spoken to me. I like to think this is a certain kind of crazy.

What is "KdM"? The CFS doc I had them speak to is someone here in WA state, not someone as famous as Klimas or Peterson. Still a solid doctor though, with 25 years of experience with CFS ("before they gave it that name" as he puts it). There is no lack of evidence or anything of the sort. There really isn't.

I felt for some time that, although we did not see eye-to-eye, they truly wanted me to have the support of my medical providers, this took a nose-dive when my PCP showed me an email "not intended for me" from them that laid out how they knew several people who had had CFS and were better now and that they thought I was drawing my illness out in part of having had so many of my friendships fall apart. Instead of viewing that through a lens of: she moved and, after 5 years, most of those friendships were gone and she can't visit and people freaked out when I had to apply for disability, it had been decided that I "alienated" every single person who had cared for me. I think probably anyone here can relate to the realization of who you choose to be your friends prior to becoming ill does not necessarily match who you would choose after becoming ill. I think they are out of straws to grasp at.

Emotionally, I've managed at last to create some decent space/boundaries between us, and haven't been reacting every time they tell me to "jump!" Getting by on my SSDI and making a complete break is my dream, but not even close to possible--not even close.

I do appreciate the feedback and support, but I can honestly say that there is no one left to try to convince them, and no information that supersedes their beliefs. I think that people with quite a bit of money don't take hearing "no" very well, and it's just a matter of, if you say something that challenges their belief, you're out.

 

[leela]

Zoe I am totally embarrassed! I have been so badly confused lately (found a smelly open container of hemp milk in the cupboard with the new ones) that I got you confused with another poster in a similar familial situation who lives in Honk Kong and is a patient of KDM.

This is such a familiar situation (sad but true) for so many of us and my heart just breaks for us all every time I hear another tale like this. I apologize for having the brain fart but please know that the care, concern, and love coming from this direction is totally sincere, brainmush notwithstanding.

Always love,
~leela

 

[leela]

prolly you know about this already, but another poster turned me on to my local 211 website, so I did a search for WA:
http://www.win211.org/

I know it won't be the same thing as having loving family members offer you what you need for alternative or uncovered care, but maybe there is something there that can offer a resource you didn't know about.

We can still hope your family will come around, too......

It really is a form of collective craziness, this bizarre denialism.
My uncle's family treated him like crap for having MS, even on official disability--they decided in their minds they knew better than he or the disability people what he was going through!

 

[zoe.a.m.]

Thanks for the 211 website leela, I will check it out. I've been searching for services since Feb that SSDI would qualify me for, but it seems my most helpful therapies fall outside of what Medicare covers and so there don't appear to be solutions that I can find.

It sounds like maybe your uncle and I might share family members, it is really very sad. Unfortunately the plate of a CFSer is already so full with surviving, there isn't anything left over to deal with the nonsense around denial and ignorance.

 

[taniaaust1]

Hi zoe. I doubt if you could sue family for that as once one is of age one has all responsibility of oneself (unless one was mentally disabled and didnt have the mental capitablity to take care of oneself and then if family wasnt taking responsibility the person then would be taken into state care.. it may be called something else in your country).

I have a family too in which I cant get help in anyway .. (ive even been left out of family parties and important events as no one wants to be bothered picking me up.. one christmas I spent alone and crying due to that).

It all then comes down to disablity pension and having no choice but to budget for that (which often means missing out on supplements etc which were helping us or cutting back on food so we can spend more on supplements).

 

[Dreambirdie]

Zoe, I am so sorry for your situation.

CRAZY IS and WILL ALWAYS BE CRAZY. In my experience, no amount of family therapy, notes from doctors, blood work with necessary proof or even a letter notarized by God can make crazy go away. The best option is to take what you can get and get the rest elsewhere. The stress of convincing the un-convinceable is just too exhausting.

 

[Mya Symons]

Would showing your family that this is a serious disease that people die from (http://www.ncf-net.org/memorial.htm) help or would they take that in the wrong way (such as a guilt trip)?

 

[kurt]

Zoe,
Hope I'm not mis-reading the situation, but I went through that some years ago and realized that people will eventually find a way to do and be what they really want. You may not share values with your family, that is hard to realize but often illness like ME reveals that. We tend to think that people around us are 'like us', particularly when they are family and claim to hold charitable values. In fact they might be charitable, but selectively, and superficially. People become who they want to be, and often act nice and charitable to look good. But you just have to look at their behavior to know who they really are. Your family is not nice, not charitable, and probably has only really supported you in the past because they felt obligated, not out of caring or love (even if they say it was out of caring or love, it was not, the evidence is clear). They are probably wrapped up in their own worlds with their own heads, have their own issues and pains. A sick person just does not fit in to a non-charitable healthy person's universe. Period. Never has, never will. I think you need to get over that and find a way to move on.

I also have financially well-off relatives. And they support their own friends and charities, but resist helping me. Perhaps it is my personality, or maybe it is the social wierdness of ME. Or maybe they don't see the end of helping someone with an unknown chronic health problem (which is true, where is the ending? we don't know).

What makes things harder is if you are around wealthy relatives, see how they live, what they can do, and you have nothing like that. Perhaps if roles were reversed you would do better than them, hard to say unless you have been there. We are sick, it is not psychological. We have to fight for our rights collectively and individually. But part of our survival is to accept our circumstances.

Like Dreambirdie says, 'the stress of convincing the unconvincable is just too exhausting'. We have limited energy and rather than find a way to battle your family, I think maybe it is better to work with them within their own comfort zone, or not at all.

One more point, I suspect that family members who are in denial about the seriousness of our condition are actually afraid of getting sick themselves. This is denial on their part, if a blood relative is disabled by ME, then they might be vulnerable themselves. This might not be said, but I think it is there subconsciously. That might be part of why they avoid you. As they get older and start having health problems I think you may see some of them coming around. My aging parents for example are finally starting to 'get it' about how I have been for the past 15 years, now that they are experiencing decline and fatigue, and serious health problems themselves. They are not supporting me any more than ever, but at least there is finally some real empathy. I don't know if they will ever 'get it' about how difficult my life has been, maybe that is not their life pathway to care. I have had to just let go of hope they would ever really understand. And I am amazed at what I have learned in all this about human behavior. Our society is greedy, selfish, and delusional about so many things. And people do not live their stated value systems very well or often. Maybe we all need to be more honest about that.