How do you cope with invalidation?

Discussion in 'General Health & Wellness' started by Patriciann, Mar 19, 2012.

  1. Patriciann

    Patriciann New Member

    Hello everyone,

    I was diagnosed with CFIDS in 98 and with the loving support of my husband/best friend I adapted and learned how to 'live' in spite of being severely disabled and homebound and then in 2003 my husband died and my life of struggling to live with a severe disability became a Twilight Zone nightmare where I finally was able to achieve my widow's benefits to live on, after five years of no income and then, from coping alone, I often overdid it here in my home out of necessity, leaving me almost constantly bed ridden.

    It was suggested that I seek in-home support from department of social services as I fall down a lot from muscle weakness and dizziness to the place once of breaking all the bones in my left ankle needing emergency surgery where a metal plate was placed on the ankle followed with a cast and being placed into convalescent care, as there was NO ONE to care for me at home since the death of my husband.

    A social worker came to my home for a visit and we sat in the living room, which is NEVER used as I 'live' in my bedroom as I am ill in bed much of the time. I walked with a cane for support and had been ill in bed five days by the time she came for the visit and had not had a bath in several weeks from putting the limited energy I did have into other activities of daily living such brushing my teeth, etc while also trying to care for my home without any help. I had even been too ill at the time of her visit to wash dishes and had been reusing dirty dishes to eat from, which was fine for the few days I was too ill to wash dishes and happens from time to time.

    It was that when she went to leave and stepped out onto my front porch she turned to me and stated, "It is obvious you clean house VERY WELL and you are taking VERY GOOD of yourself." I broke down and cried and asked her how she came to that conclusion and she told me it was on the appearance of my living room. I told her the Christmas decorations she saw out over the fireplace had been there for the past seven years as it broke my heart when Christmas came around and I would be too ill to decorate so these few ornaments were out year round. She mentioned about sending someone to help clean house and continued on her way. It turns out she COMPLETELY INVALIDATED my reality and NO HELP at all will be sent here. I am into year ten of coping alone and even right now I share this with you from bed using my laptop to 'stay connected'. I have followed up with filing an incident report with her boss to get my 'truth' out so corrective action could take place. I am completely ignored and even my email are not responded to.

    How are we to SURVIVE this sentence of SLOW DEATH while we cope alone in such desperate need?

    Gentle ((hugs)) shared with everyone coping with this nightmare reality while trying to survive such DEADLY mistreatment.
    :) Patricia
  2. rockgor

    rockgor Well-Known Member

    Welcome to the board. Sorry to hear about your situation. There are lots
    of nice people to talk to here.

    If you look in the upper left corner of the page, you'll find a drop down menu.
    It lists several boards at this site. There is a combined board for Chronic
    fatigue syndrome and for Fibromyalgia. You will probably get more response
    if you post there.

    If you like, I can cut and paste to move your post. Or one of our
    moderators might do it. I know it would take a lot of effort to retype.
    In the future, you might want to use more paragraphs. Some of us here
    have cognitive and/or vision problems.

    You may want to visit the Chit Chat board which provides some social
    life for those of us who don't get around much anymore. Folks talk about
    their kids, pets, pet peeves, old cars or music or times, etc. The threads
    labeled Porch and Lounge have no topic. People just drop in and discuss
    whatever is on their mind.

    With regard to getting some assistance, I suggest you get a notebook
    and start calling government agencies. City, county, state, federal.
    Call the welfare dept., social services, aid to the disabled. Call the
    Goodwill. Try churches. Maybe a school or church can provide a volunteer
    to help. Write down the date and time of phone calls. Who you talked
    to and what was said.

    If you can't get any assistance, try contacting newspapers, radio or TV
    stations. Have you investigated the possibility of collecting Social Security
    benefits? Either from your employment or your husband's?

    We have a disability board that might help. And you could call a Social
    Security attorney. My understanding is the attorney fee is collected from
    whatever award is obtained rather than directly from the applicant.

    I hope some friend or volunteer can help. Good luck.

    Rock
  3. Mikie

    Mikie Moderator

    There are a lot of ignorant, mean people out there who have no conception of our illnesses or how they affect our lives. Healthcare workers can be some of the worst. Unfortunately, these people are often the very ones we depend on for help. We should not have to suffer insult on top of everything else we go through.

    My prayers are with you.

    Love, Mikie
  4. spacee

    spacee Member

    That woman should not be a social worker. She has no talent, understanding
    or knowledge of what a very ill person goes through.

    Bless your heart. We all feel deeply for you and each other here on the boards.

    Hugs,

    Linda/Spacee
  5. TwoCatDoctors

    TwoCatDoctors New Member

    The social system is really not set up for anyone that is not bedridden. I have seen too many people that if they have the least bit of mobility, it is used against them. It doesn't matter if they can't wash dishes or clean, or if they fall. Years ago when I was first disabled and it was so bad, I was told that anyone not bedridden would fail in their guidelines to receive help.

    I just went through a social worker friend trying to find someone to help me with cleaning up my place and I would pay a lower cost. Unfortunately, the person was a wackadoo and called me day and night for no good reason so that was terminated without ever starting.