1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

upset after social workers visit.

Discussion in 'Lifestyle Management' started by taniaaust1, May 23, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,827
    Sth Australia
    I had the new disability services social worker today come out to meet me. Ive been left feeling quite upset after her visit. No help to me at all.. only had complaint over something i was doing. She was a nice lady BUT

    On arrival.. she started on about the lamb who I have on a rope (attached to her collar of cause) at the front of my house to try to keep my grass down (at night she's loose in back yard). She went on about how that isnt allowed due to being in a town...blaa blaa blaa (thou my neighbours are fine about the lamb). When I told her my neighbour is upset over the long grass.... the social worker was still on at me over the lamb and going on about how cruel I are to have a lamb on a rope.

    Then during the convos she said something about how I sounded like I have borderline personality disorder ... just cause I was telling her how I cant survive without help!! (so obviously she just wasnt getting how sick I are even thou Id explained to her that I once choose to go to jail just so I wouldnt be missing meals etc)

    Then it was like I was having to try to prove to her how ill I are and all my diagnoses... she also was questioning the amount of care I get from the disability org she works for. (so now Im concerned she may get some of the care/home help removed thou I only get 5 hrs per week).

    She once again stated they cant help me with garden (I forgot to bring up my transport issues to doctors due to the trouble I was having to just get her to understand the rest). I also asked about getting the broken rail in bathroom fixed (replaced with proper one suitable for disabled people.. its currently broken again) .. Keeps getting broke due to my collapses or having to use it for support at times.. and she goes "well as you arent always like that, we dont know if we can help you with that"
    (sighs so we become not important as we dont have the same symptoms every single day? just cause I dont fall down every day.. i cant get a suitable one Im not going to keep breaking put in).

    Its shameful how the Disability Service of this state (sth Australia) are treating me. If I was elderly and had a lot of falls.. Im sure I then would be able to get one put in.. but no cause I have ME and POTS.. they wont!! Once again.. due to THIS illness.. ME/CFS Im discriminated against.

    :( when will they stop to treating this illness like a part time thing!!! I NEED a proper rail suitable for a disabled person in my bathroom...

    anyway.. ive been left in tears after this latest social workers visit. I wonder why I bother only to be told by social worker after social worker no matter where I go to.. there is nothing we can do..
  2. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,823
    Likes:
    914
    US
    Arghh, all that is some of the worst you could hear :( The agencies must tell them to be critical and look for any reason t deny someone!
  3. alex3619

    alex3619 Senior Member

    Messages:
    7,072
    Likes:
    10,924
    Logan, Queensland, Australia
    taniaaust1 likes this.
  4. mellster

    mellster Marco

    Messages:
    799
    Likes:
    178
    San Francisco
    Re: lamb - this is a perfect example that people have to be careful when crying for more government regulations. Who the heck cares if your lamb keeps the grass down and your neighbors are fine with it? Hope she doesn't cause you more problems.
  5. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    149
    Italy
    Hi Tania,
    I am so sorry to hear about all this.
    It sounds as if the silly woman was more concerned about the damn sheep than about you!
    Sending you love and hugs...
  6. Mary Poppins

    Mary Poppins PJ Princess

    Messages:
    316
    Likes:
    68
    Oh, Tania, that's deplorable. Making diagnoses? Value judgements on perceived animal cruelty and council regulations?

    Goodness gracious me.
    justy likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,687
    Likes:
    5,524
    Albuquerque
    Tania,

    I had a friend who kept a pet goat in the yard--not tethered. A social worker came to visit and the goat's judgement was better than the social worker's. the goat jumped on top of her car and pooped!

    Sushi
  8. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    115
    [quote="taniaaust1,
    :( when will they stop to treating this illness like a part time thing!!! I NEED a proper rail suitable for a disabled person in my bathroom...

    ..[/quote]

    sorry you had to go through that i can understand why you are upset and was left in tears....you are right that alot of people treat these illness like it is nothing or just something that happens part time thing.....ive asked, ranted about this and i dont understand it at all...these illness can be very very debilitating but why do people treat them like they are nothing??? i just dont understand...

    anyone else with another illness that pepole understand and give sympathy and respect for the person peobably would have treated much better than the lady did you...let someone else with another illness same symptoms or even not as bad have a lamb to eat grass and they probably would have been patted on the head for being resoureful...
    makes no sense.....no one as sick as you are should be left in tears by someone who is suppose to be there to help them.....no one in their right mind would want to be sick wiht these illness..
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,827
    Sth Australia
    lol thanks for that.. it made me giggle.
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,827
    Sth Australia
    I was at my CFS specialists yesterday.. and asked him what I should do about the rail in the bathroom. He told me that the housing people have a form that I need to request and then get him to fill in and send it back. So it appears I can get that rail properly fixed :) (that's the kind of advice the social worker from the state disability service should of been giving me!!! Im sure she just isnt trying to help cause she dont believe Im that sick.. why didnt she give me that advice and tell me what I needed to do?).

    I also told him about how the social worker seemed to be judging if my illness was real or not and asking to see tests... by the comment he made, he really may end up giving her quite a talking too if she rings him there.. he wasnt happy at all to hear she was questioning my diagnoses.
    ...........

    I ended up emailing my local MP the other day over it all.. havent been back to my email yet to see if Ive got a reply. (my local MP turned out to be a previous something to do with disability I saw when I looked at her past history). Ive having a pain day today so dosed up on two different pain killers.. so are trying to take things easy.
    SickOfSickness likes this.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,827
    Sth Australia
    Update..

    The social worker this thread was about and who really upset me last time.. rang today.

    Strangely saying she wants me to see me again ASAP (why??? seeing she said the disability org couldnt help me with anything last time she saw me..including with the bathroom rail on the grounds cause my disability level is up and down all the time).

    To my surprise when I asked "why" she wanted to see me again and soon, she then said about the rail in my bathroom that they can help me get suitable one.

    I assume the state disability service has now heard that I complained to my local Member of parliament (MP) about them and what was going on and how they refused to help (I made a complaint right after the disability orgs social workers visit). I cant figure out why else she'd suddenly want to be changing her tune. So I guess the MP has contacted them.


    I told her when she rang, how upset I had been by her last visit and on being judged by her.. (she goes to that "I didnt judge you over the sheep, I just voiced my opinions" she obviously she dont see she did even wrong)... but there is NO WAY after that last visit, that Im going to see her again without another being present at the time.

    She then during the phone call.. goes "we need to find out your aims in life and goals" and work on them. ***sighs** OMG... what on earth has she been reading about CFS now, does she just think im unmotivated and needing help to work out life goals?

    She wasnt happy Im making her wait till the 20th to see her again but I wasnt about to change my home help time when I get taken shopping etc, just so she could come and see me and I will not see her alone. Im like what the fuck is this all about now (excuse my language).. i cant understand this social workers sudden need to be seeing me esp after what she previously said (and my specialist has now told me how to go about getting my bathroom rail fixed, without having to go throu the disability service org, so I dont now need their help now for that as I can do it just with the gov housing people, their forms and my specialist filling them out).

    Im still wondering if I should of just refused to see her again.. esp after hearing her mention the words "life goals". She did thou say that quite possibly my social issues could be helped eg i cant get out to socialise due to no way of getting out to do that . She did say she wants to help improve my quality of life.

    Im thou very very scared she's just said that to like get me to have another appointment with her and will then turn around and tell me (as I keep being told.. "we cant help")... maybe this is about to be some attempt at CBT re life goals being mentioned.. attempt on me. Which is no good at all when I cant get out as I cant safely drive and cant be out alone due to the risk of me collapsing.

    I do have life goals but completely unable to do them right now. My current goal is just getting my health needs and other life needs met.

    I guess as I dont think the states disability service has not till me, taken on a ME/CFS case.. I think Im like their "test case" so now they seem to trying to work out what to do with me. (It kind of makes me want to laugh as its so irronic for them to be wanting to talk life goals with me, when I have a ton which I cant do and currently in a state of just getting throu each week ok is my current goal). They are so so out of touch with ME.... the advisors one could say dont know a thing about what they are trying to help with. Life Goals :rolleyes:

    I may end up cancelling out this appointment she wants with me. Before Im sure if I'll go ahead with it or not, Im going to email her and try to get in writing how she thinks she can help me eg if she is able to help me get to a social group.. I'd like to have that in writing (if she cant.. well I know I wont get anything in writing.. Ive found out too many times in the past when dealing with gov depts.. spoken words are meaningless).
    If she cant actually say what she's saying in writing .. I will probably cancel. (im not about to have an appointment with someone just for the sake of it and be disappointed again).
  12. alex3619

    alex3619 Senior Member

    Messages:
    7,072
    Likes:
    10,924
    Logan, Queensland, Australia
    Good for you Tania, you not only helped yourself but the next person with ME who comes across these people. :) Well done.

    Life goals: I want to survive long enough to see a cure so I can have a life for at least a little while
    : I want to help make this happen for not just me but others.
    : is there a third? We do create goals and these give us some focus - I guess my book is my third goal, it will help keep me focussed for years to come.

    When they talk about goals they often don't get how limited our options are.

    Best wishes, Alex
    taniaaust1, Athene and SickOfSickness like this.
  13. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,150
    Likes:
    8,604
    Amersfoort, Netherlands
    I wouldn't be surprised if she thinks ME/CFS is a psychological problem. It would explain why she isn't helpful - we're supposed to gain confidence from learning we can help ourselves! Also the fixation on socializing more - we'll feel better emotionally, and the ME will go away!

    She does need to understand your disease somewhat (or at least not misunderstand it) to help you. So I think it's fair to at least ask her what she understands about ME and how she thinks she is capable of helping you.

    I don't think psychologists should be sent to deal with someone with ME/CFS, even if they are a social worker as well. They usually have too many biases to begin with, and even if they start off knowing nothing about ME, the sources they're going to turn to, and trust, and want to believe, are the ones with a psychological explanation.
  14. Calathea

    Calathea Darkness therapy

    Messages:
    1,083
    Likes:
    535
    Scotland
    I'm not sure if it's a good idea to see her again, but whatever you do, do NOT see her alone. Make sure you have your partner there, an advocate, a friend, even a neighbour if any are sympathetic. Someone who will fight your corner and make her leave if she's distressing you. They should also take notes, so that they can act as a witness if you need to make a complaint. If you can't find someone in time, change the appointment. You have every right to do this.
  15. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,823
    Likes:
    914
    US
    I agree with you. You're being smart, to ask her to put it in writing, and to not see her alone, and being suspicious about these "life goals". Do you think your neighbors contacted this org to support you?
  16. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    149
    Italy
    Hi Tania,
    I think she may have some hidden agenda and I agree with Calathea that you should not see her alone.
    I wonder if she has read some half-baked description of CFS and wants to be your armchair psychologist now?
    Do you know the exact definitions/limits of a Social worker's responsibilities and authority? It might be necessary to put her in her place if she tries to step outside her job description with you.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,827
    Sth Australia
    nods.. yeah its probably not a good idea for me to see her again. I do have an issue with not giving up. If i dont see her again without finding out exactly what is going on now, I'll be wondering if I gave up too soon. I just keep on hoping and hoping that things will get better and keep hoping I will be treated right.
    Unfortunately this postive attitude I keep trying to hold onto, keeps screwing up in my face.
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,827
    Sth Australia
    As far as Im aware, she's not a psychologist but who knows, that org knows I dont like pyschologists (I told the last psychologist they sent my way that) so quite possible they have sent another under the guise of "social worker".

    I had non psychologist social worker in the past thou (with a different org) .. try to stupidly act as a psychologist (and tried to administer to me memory tests she wasnt qualified to be trying to do).. On that occassion one tried to pronounce me with "no memory issues at all, you are imagining your memory issues", after adminstering an atlzeimers (sp?) memory test to me which asked questions like "where are you now".. when I was in the same home ive lived in for 17 years. When I did get questions wrong in the memory test.. she'd go "try again" so she didnt even administer that properly).

    No.. the org hasnt been contacted by my neighbours .. its the disability org one needs to go throu to get government funding for home support services etc throu other orgs and hence why Im now a client of this org.

    Im scared as my new CFS specialist thou he is treating my symptoms, he's one who believes in things like the PACE trial... so really feel uncomfortable about him talking to this org. I wish I still had the specialist who retired a few months back and who previously talked to this org.
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,827
    Sth Australia
    No i dont have any clue what she's allowed and not allowed to do in her line of work.
  20. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,150
    Likes:
    8,604
    Amersfoort, Netherlands
    Odds are very good that she is not licensed to diagnose or treat medical problems :) Reminding her of that is always an option, if she crosses any boundaries.
    taniaaust1 likes this.

See more popular forum discussions.

Share This Page