Really? Was It?

According to the dictionary, ‘gaslighting‘ is a form of manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, hoping to make them question their own memory, perception, and sanity.

I remember watching the old 1940’s film, ‘Gaslight’ as a kid, the husband manipulating the wife into believing she was losing grip on reality.

Never has the term ‘gaslighting‘ been more apt than today, when thousands of us with indefinite Disability Living Allowance awards are being reassessed for Personal Independence Payments.

You thought you had MS? Parkinson’s? Think again.

You thought you had problems with balance, walking, cognition? Think again.

You’ve taken the time and immense effort to fill in the 40-page form (which essentially amounts to writing the equivalent of 14+ essays). You’ve endured the stress and fear of losing what is for some the only payment between you and poverty (it certainly is in my case).

You have also probably gone through the extremely difficult process of raking through your life, highlighting just what you cannot do, after years of trying to be upbeat, contribute to the community and in short, remain an active member of society.

Yesterday, I was slumped on the sofa after work, The Teenager slumbering safely upstairs in his old bedroom after a night out catching up with friends, back for the Easter break from University.

Despite my fatigue and pain, I felt proud I was still working and I was still able to maintain our home of 14 years.

However, reading through my PIP Award (never has a word been so misused) Letter, I felt deep confusion. I was reading about someone else. This never happened. I don’t recognise the assessment in the letter, and neither did my witness.

With an illness such as MS, this seems particularly cruel, as the diagnostic process can seem similarly confusing.

For months, years for a lot of people, we try to make someone ‘in charge’ make sense of our random bundle of symptoms. They often don’t hang together well (we all get tired, we all feel a bit buzzy around our feet at the end of the day?).

Even six years after my diagnosis, I still feel like a fraud – how can you possibly describe what it’s like to have MS when so many of our symptoms are internal? And internal, impossible-to-see symptoms are easy to dismiss.

And this is despite me having highly-active, or rapidly-evolving MS, for which I’ve had Lemtrada treatment three times, one more than the standard two. It’s a brutal treatment and not one undertaken lightly.

During my PIP assessment, I was led, confused and upset. Not true apparently. I was well-dressed, confident and happy. Who to believe?

Who do you believe?

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16 thoughts on “Really? Was It?

  1. Christine (Chris) Mountford says:

    Hello. I’ve followed all of your posts with a gathering feeling g of frustration, unease, discontent and sheer helplessness as to how I could do or say anything that might change the situation for you. Of course I can’t but your experience will be stored away, only to be brought out when I too am at the stage of asking for help. Lemtrada has worked for me so far but I’ve made the decision to retire rather than carry on struggling with the stress of my demanding job (I don’t want to let anyone down). There is a lot I can’t do any more but at 60, maybe it was unrealistic for me to carry on doing parkour at the weekends…
    Please let us know what the final decision on PIP is for you. In the meantime, ask the teenager to make you a cuppa tea and tell you it’s from me. xx

    • stumbling in flats says:

      Thank you so much for your lovely and kind comment, it means such a lot to me.
      It was dispiriting to receive a knock-back and the ramifications are huge for the tiny parameters of my already tiny life. I’m definitely going to fight back and I’ll do everything I can!
      Lemtrada has been a god-send for me; it’s given me breathing space. However, having had a third course worries me and I worry about the future, especially with all the DWP stress.
      But I’m still here, still trying to forge a normal life for The Teenager, even though he is at University. I want to have safe base for him to call home and to come back to 🙂 Xx

  2. Michael Johnson says:

    This exactly describes my experience with PIP – and did doubt, for a moment at least, that I really had MS. It didn’t matter how deep I went into my symptoms because they deemed them to be different and ok.

    Apparently, I only have one bad day a week, can walk 200m but not 100m (yep, still confused) and can stand for 10 mins then walk but further on in the assessment it says I have trouble standing for 10 mins.

    Still, I have since been promoted, have the perfect job and your book keeps me smiling…and laughing. When is the audiobook version coming out? 🙂

    • stumbling in flats says:

      It’s just so random, isn’t it?! So you can walk 200m but not 100? Makes zero sense.
      So glad to hear about your job, fantastic news! And thank you for the lovely compliment about my book 🙂 I must look into an audio version!
      Have a fabulous weekend and keep smiling! X

  3. Robyn says:

    I’ve been fighting for PiP as well.

    I just received their report and it has answers to questions I was never asked and outright lies.

    I, unfortunately, didn’t have a witness, but I am going to fight this as far as I can. And I’m getting my MLA (I’m in Belfast) involved.

    Good luck to us both.

    • stumbling in flats says:

      I’m really sorry to hear this – it sounds so similar to my report.
      Crossing everything for you! X

  4. Marybeth says:

    I am in the states so I don’t have a PIP form but our healthcare is a nightmare as well. Fingers crossed it goes well. Cyber hugs!!

    • stumbling in flats says:

      Hi there! I’ve heard that about accessing MS treatments in the States, and all the form-filling 🙁
      Thank you for the hugs!! X

  5. Marybeth says:

    Funny how the despite the different countries, the issues are so similiar…yikes!!

  6. Marybeth says:

    no kidding!!!

  7. Joan says:

    I wrote this at the start of your ordeal with the DWP, misplaced it and now found it again, so thought I would send it to you anyway.

    Do you really need to judge me?
    Can’t I just be left in peace?
    To live the life that I’ve been dealt,
    As my symptoms will increase.

    Independence has been stolen,
    By a thief in the night.
    Equality has not been given,
    As is our human right.

    The dignity we had,
    On our way through our lives,
    Has been cut very quickly,
    With many short, sharp knives.

    No more self-reliance,
    No more privacy and respect.
    We’re looked upon as lumps of meat.
    But what more can we expect?

    The MS is shutting me down,
    Like an oil-less factory machine.
    I hear your words, but do you hear mine
    And do you understand what they mean?

    I’m not going to go travelling,
    To shores abroad anymore.
    I’m not going to live extravagantly,
    Nor open a designer shoe store.

    No, I won’t be dining expensively
    And I won’t be tasting fine wines.
    I won’t be doing anything rash,
    Like investing in diamond mines.

    So, the monies that I’m allowed,
    To live my existance as such,
    Will be used for food and bills,
    I will promise you that much.

    Good luck!

    • stumbling in flats says:

      Hi Joan!
      Wow – that’s a powerful poem and totally captures what this whole process is like.
      Thank you so much for sharing it with the blog, I really appreciate it 🙂 X

  8. Marybeth says:

    Yes, that makes this crazy roller coaster ride much more bearable!!

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