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?
I’ve had some lovely emails recently, thanking me for highlighting both the gruelling PIP process and the issue of poverty amongst disabled people, like myself.