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vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
Hi,

I am not entitled to disability or any benefits in the country I currently live in, as fibromyalgia, CFS, nerve damage or my lifelong mental health issues (BPD, major depression, social anxiety, PTSD) are not considered 'enough' to be entitled. Sad, really really sad. I am very lucky that I have a supportive family and some savings, but for those who don't have those, and suffer from the same, I really feel for them.

On the other hand, when I lived overseas and was 'only' diagnosed with BPD and major depression, I was on disability. But I felt guilty about it back then, because I had ok days, when I really felt like I could work. And I really wanted to work, because my days needed some structure and I get bored so easily. But the state told me not to because I was 'easily a danger to myself'. And of course on bad days, I was very thankful to be on disability and that I was living in a country who cared more for me than I did for myself.

Now, slowly my savings are running out and I am beginning to feel more like burden to my family. I want my independence, my own place, my own income....so I am thinking of moving back to the country where I could claim disability.

But I also feel so guilty. On one hand, I feel like I deserve it, I have really tried my best in life, I did my best not to be burden on anyone, studied hard, worked hard for many years, did volunteer work even from my hospital bed, but it is simply no longer possible. If everyone else deserves disability due to their mental illness and/or fibromyalgia/CFS, then I 'deserve' it too, right? says one voice inside my head.

On the other hand, there is this loud voice inside of me that tells me that I should not be a burden on anyone, that if I can't make a living on my own, then I should not live at all. That I am not worthy of disability benefits or any treatments to make me feel better. I must be deserving of all of this crap going on in my mind and body.....

Can anyone relate, in any way?
 

Sagey

Senior member
Joined
Nov 20, 2014
Messages
209
Reason
Other
Diagnosis
06/2011
Country
Us
State
NY
Hi Vickythecat,

Of course u diserve benefits! For your physical and mental illness.That is why they started disability.
Maybe it is a good idea to move to an area where u can get it.I know u want to be independent but I also don't want for u to be all alone.

Will u be ok without your family? If the answer is yes then maybe getting money for disability will be good for u.Since you said your using up all your savings.It sounds like your family is supportive and I'm sure they want to be there for u.
It's a hard decision, but look over all the positives and negatives.Sit down and write down the pros and cons and look at it and then decide.

Your savings will eventually run out,and u will need money.So talk to your family and see how they feel about it too.I did go on disability otherwise it would have been difficult to get by, even though it helps it's not like working.

I think in your head your feeling guilty and stressed and starting to second guess yourself.Dont ever think your not worth it.On this forum you have given good support and advice to people.So hang in their It will work out for u.We are here to help


Hugs,


Sagey
 

queeremo

New member
Joined
Jun 22, 2017
Messages
7
Reason
DX FIBRO
Diagnosis
11/2016
Country
US
State
Delaware
i have similar diagnosis, and my partner is begging me to apply for disability because he can see what working is doing to me, but its terrifying. i doubt ill get it, but i feel guilty even trying because i know i have occasional good days. its just so messy, disability, and giving someone the decision on whether or not we can be productive under capitalism feels vulnerable. im sorry youre going through it pal
 

Peaceandquiet

Active member
Joined
Apr 17, 2017
Messages
97
Reason
DX FIBRO
Diagnosis
04/2017
Country
AU
State
East
Hey Vicky,

Without even knowing it, you ARE still working;
You are a full time volunteer in online counselling. You have been one of my greatest inspirations and I really look forward to reading your posts of encouragement to members on the forum, old and new. I'm not sure if it comes from having lived through such adversity yourself or whether you are just a really smart girl who is open and honest about life, but in any case, your worth to me is huge. I just thought I should tell you that. x

I share your feelings, though, about not being able to earn money anymore but also not qualifying for disability. It's a very difficult position to be in. I see your dilemma but going back to a country where you can get benefits you will be away from your family so I'm not sure that's such a good idea either. I hope that whatever you decide, that you are not alone, but with caring friends or family who no doubt love you very much. Don't listen to that stupid loud voice in your head saying you are a burden. I can relate....it happens to me too.... but from my perspective, you have greater value than you even know.
 
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vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
I am crying now... these are happy tears....

all your words have touched me so much. Just writing on this forum, sharing my thoughts, trying to help people .... I had no idea people were actually reading my posts.

It proves that no matter small, we can make a difference despite our mental/physical inabilities. This goes for all of us here.

Thank you thank you thank you, from the bottom of my heart.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
I also read your posts vicky and you are one of the people i most relate to..please also from me feel your worth ...you are lovely deep caring individual...i feel i 'know' a few people on this forum more personally and you are one of those few and would miss hearing your inspirational contributions and about your life.

the decision is a hard one...talk to your family ..be honest...see what they say...if you had a down turn and needed them i also hate you to be too far away....but then you could always 'go home' again anytime in the future if you feel independence would help you right now.

I dont know where you are but is there absolutely no chance with maybe some sort of legal representation or just persistence and lots of medical back up you could get disability in the country you are in? I really thought Fibro was recognised world wide now as a debilitating disease and major depression PTSD BPD are all serious mental health issues too i'm surprised having suffered for years which I'm sure is documented you wouldn't qualify.

I know you are smart and will have researched so i wish you luck whatever your decision.

I too struggle with feeling a burden because of all the help i need.

TAKE CARE HUGS X
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
575
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Vicky, if you have done all the things that you list in your original post on this thread, then truly there is no cause for you to feel guilty if you get disability. However, I fully understand how you feel because I know for a fact that I would feel the same way, which is why I have never in my life accepted public assistance.

The thing is, being who you seem to be from what I see here on this forum, you will never be useless or worthless to the world. You are clearly a compassionate caring person. If you have done volunteer work even when bedridden then there is a pretty good chance that if you are on disability you will still be doing some kind of volunteer work.

Think of it this way: If you were to move, and get on disability, that would probably remove from your life all the stress caused by feeling like a burden on family, not making an income, worrying about money and your diminishing savings. With the energy that the lowered stress would give you, you could go back to doing some small amount part time volunteer work and feel productive and happier.

You don't have to work or volunteer full time to be valuable. The truth is, sometimes only a few words to the right person at the right time can make a world of difference! I think that if you give yourself the chance you can help people if that is what you want to do. As someone said above, you already do that, here on this forum.

So do what will make you feel happier, and if that is to move and go on disability, do it, hon. We are all here to support you.
 

TomT

Member
Joined
Jun 14, 2017
Messages
13
Reason
DX FIBRO
Diagnosis
04/2000
Country
US
State
Nevada
Hello Vicky, I used to follow your posts on a different site and got to know your story somewhat. I feel very sorry that you are in such a tough situation. I am very embarrassed that there appears fromall that I have read that people of my gender are as a rule much less supportive to their spouse or significant other than I find to be the case when the male is the one with Fibromyalgia. You must put any thoughts of not deserving disability to rest. You most definitely deserve all of the help that you can get. When I went in for my disability hearing the judge asked me if I could do a job requiring lifting 5-10 lbs. of course I could. I asked how often and he responded 40 hours per week throughout the year. I told him that while I could lift the weight, if I tried to do that for an entire day then I wouldn't be able to show up for thee second day. The key isn't whether you have a good day and could do that day of work occasionally but rather each and every day. You can't look at what you can do on the good days that you are blessed with but rather the whole story of being able to repeat the same job daily. I left a government supervisor job because I couldn't be at work each day and couldn't perform at an acceptable level when I was there. Please look at what your long term capabilities are rather than the occasional good day. Best of luck Vicky,
 

Wineisfine

Active member
Joined
Feb 9, 2017
Messages
41
Reason
DX FIBRO
Diagnosis
02/2010
Country
USA
State
FL
HUGS to you Vicky

You deserve the best, and please dont think otherwise.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
TomT while a different subject thanks for your acknowledgement that us ladies tend ( not always) to get less support and understanding of this condition than men might get from spouses or partners if they have any ill health condition.

Of course this is a generalization and i think many on here have hubbies that do give unconditional support even when they dont totally get it..but for others its not been so good and has affected our health to not be believed or even belittled when we are fighting our very best to be as normal as possible.

Thanks for joining in.
 

Akshunhiro

Member
Joined
Jun 21, 2017
Messages
16
Reason
DX FIBRO
Diagnosis
04/2012
Country
AU
State
NSW
Hey Vicky :) you said you worked for many years. Then you probably paid taxes for that. Think of disability support as getting those taxes back. I understand your concerns. I felt them too. No matter how much I wanted to be working full time and independent, I just can't do that anymore. But if I could still work some, then did I deserve disability? Yep. Because I can't work reliably or often enough. Holding a full time job would be self destructive and exceedingly difficult. All my energy would go to that, to the exclusion of all else. This is the reason I stopped working in the first place. Because my life was not worth living while I worked. I was absolutely depressed, exhausted, afraid, in pain, and stressed beyond belief. It was getting to the point where I wanted to end it all if I could not find a way to escape.

Fibro is a cunningly deceptive disease. To us and to outsiders. We look healthy. We aren't missing limbs. We're not disfigured or in a wheelchair. We aren't blind. And because of that, we think we have to work. Let's not forget that fibro is a positively AWFUL disease. It is the never ending physical torture of a human being. Imagine if you were to strap a healthy person into a chair and then systematically inflict upon them the same pain we feel all day, every day, forever and ever. First of all, you'd go to prison for that :p but secondly, you would not expect that person to work a full time job as they are being tortured. Tell me now, do you still think we aren't entitled to disability support?
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
Imagine if you were to strap a healthy person into a chair and then systematically inflict upon them the same pain we feel all day, every day, forever and ever. First of all, you'd go to prison for that :p
This somehow gave me the chills!

Fibro is such an invisible illness, especially for most of us here who are also trying to mask it when we are among people. And yes, if we wanted the world to really feel our pain, we'd go to prison for even trying. Just wow......very different perspective, never thought about it like that. Chilling. Thanks for sharing.
 

Akshunhiro

Member
Joined
Jun 21, 2017
Messages
16
Reason
DX FIBRO
Diagnosis
04/2012
Country
AU
State
NSW
I didn't think of it like that either until I wrote what I wrote. But it's true. Just because there's no person inflicting the pain doesn't mean we aren't being tortured. It's even more frustrating for us because there's no one to blame and nothing to fight against. There's no reason for it. It just is. And we all have probably had a very hard time trying to come to terms with that. 'Unfair' and 'cruel' are words that flit through my head constantly. It's especially frustrating because I think a lot of us are actually ashamed of our disease. In the early days, we were told repeatedly that there was nothing wrong with us that anyone could find and many of us were told that it's all in our head. So we get to thinking that maybe we're making a fuss where we shouldn't be. Maybe we're just weak and we whine a lot. That's certainly the impression that a lot of people have about us and it leads us into believing it and being ashamed. But that's not the case!! We aren't weak actually. We're incredibly strong. If you were indeed to strap that healthy person into that chair and torture him as we have been tortured, even for just a week only, I don't think they would handle it even half as well as we do every day. I try to remember to go easy on myself. I'm doing really well. I'm handling something that no person should ever have to handle - a horrible pain disease that saps the life out of you. Yes, we are strong, but we also absolutely need whatever help there is out there for us. Don't feel guilty about disability support. People like us are not taking advantage at all.
 

medicmurphy

Senior member
Joined
Feb 15, 2017
Messages
205
Reason
DX FIBRO
Diagnosis
00/0000
Country
Can
State
Alberta
Thing is, about disability.....many of us can't collect it where I live, because the government does not consider it a disability. Plain and simple! The medical community doesn't help this situation as long as there are doctors that work for these government agency's who decide FM is NOT disabling. I've applied in the past and was turned down and was told by an RN that I shd just exersize and work at what I can. I don't qualify for any assistance.... of any kind. So, for ones like me, it's not a matter of NOT taking advantage of applying for disability. Many of us would love to. Our government could give a rats behind. Thank goodness my husband supports us, otherwise I'd be homeless. We struggle financially everyday as we could certainly use a second income.
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
Thing is, about disability.....many of us can't collect it where I live, because the government does not consider it a disability. Plain and simple! The medical community doesn't help this situation as long as there are doctors that work for these government agency's who decide FM is NOT disabling.
What a frustrating situation to be in. It is such a difficult step for most of us to even decide to ask for help, and then finding yourself being turned down because some 'completely healthy' person (who happens to be a doctor/government employer) decides you don't 'suffer enough'....

This is also the reason why it is so important that we as patients keep fighting for our rights and do our best to make the medical community see our suffering and how our invisible illness is so visible in every moment of our lives.

So, if you can, please please fight back. Talk to your GP, keep records of your medical history/doctor visits, write letters/appeals to governmental/medical organisaties, become a member of a local fibro awareness group if one exists etc..

I know it is so hard just living with fibro, but with that little energy we get now and then, we really have to do our best to fight back, fight for our rights and become visible.
 
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