'My boss called me a pain for having MS. We are not the issue'
The government is being urged to rethink its welfare reform plans as another charity warns disabled people will be pushed out of work if the plans go forward.
Margaret Martin, 58, who has multiple sclerosis, has told Yahoo News that she was shut out of work because of the inflexibility and lack of understanding from her employer, with the company often mixing up her symptoms with someone who has ME.
While Martin found suitable part-time employment later on in life — which allowed her to work from home and set her own hours — the role was cut due to budget cuts, leaving her once again at the mercy of a rigid jobs market.
The government's plans to cut PIP by changing the threshold claimants need to meet to receive support may significantly affect people with MS's ability to work, with more than half of those surveyed by the MS Society (55%) receiving PIP.
Of those surveyed, 41% receive PIP while in work, allowing them to cover the extra costs of living with a disability and work a more flexible role while supporting their disability.
Half of MS sufferers in the UK say they have compromised their health by staying in a job that did not meet their MS needs, according to new research released by the MS Society.
Martin and the charity warn that if deeper cuts are made, those receiving support could be shut out of the workforce, making it even harder for people with MS to be adequately supported to stay in work.
The MS Society is among the charities that have warned the government that cutting PIP could hinder, rather than boost, employment levels among disabled people, who rely on the support to come with the price tag of living with a disability.
Ross Barrett, policy manager at the MS Society, said: 'We're calling on the government to rethink and reverse their proposed welfare cuts, and focus on conducting a full review of PIP and the wider social security system so it better supports people with MS in and out of work.'
Martin, who worked in customer service for a car leasing company, faced numerous struggles at work after her MS diagnosis — with staff routinely confusing her condition with ME and telling her to "power through" her illness.
The 58-year-old, who was diagnosed in 2013, worked for the company for 17 years before she applied for medical retirement in 2018. She now claims PIP to support her mobility and daily living needs.
"The longer I worked there, the more I felt my soul was being sucked out of me because everything was such a struggle and my employers did nothing to make it any easier for me," Martin told Yahoo News.
Martin experiences a number of issues caused by MS, including pervasive brain fog, vision issues and unpredictable levels of fatigue.
"MS is just the pits. You can wake up one day feeling fine, you go downstairs have your breakfast and then feel like, 'Oh my God i've got to go back to bed.' It is that bad," Martin told Yahoo News.
"It's unpredictable, it's horrible, and it makes you feel like a shadow of your former self."
Shortly after she found out she had MS, Martin spoke to her boss and shared her diagnosis.
"At that time, I had no idea how MS and the Equality Act would affect me, as well as the fact that MS is a protected characteristic," Martin said.
"I was then moved around a bit. Years later, when I told a new manager that I had it, he said 'Oh my God, I am so, so sorry. That is so hard. My sister's got MS and she struggles.' Before that, there was no support really.
"I had colleagues who were undergoing horrendous cancer treatment, they had devastating diagnoses of cancer. Everybody was rightly so kind to them.
"I thought, I've got MS, it's something that i'm never gonna recover from, I've got permanent damage within my brain and yet nobody understood. It's really isolating."
When Martin's condition worsened, she asked for some reasonable adjustments. However, she says her requests were refused.
She said: "I asked to work from home and have a parking space at the front. It was a massive car park, and by the time I drove into work and parked up, I was exhausted before the day had started."
As Martin has a weakened immune system due to the MS, illnesses like colds and flu can take weeks — even months — to recover from.
But the HR department didn't seem to understand why she had to take time off.
"I still remember one of the heads of HR telling me to 'power through' my illness," she said.
"They knew so little about it. They mixed up MS with ME. And no matter how much I tried to tell them the two things are completely different, they just didn't get it," she said.
It then got to the point where Martin had been put through enough. "I woke up one Monday morning and I thought, oh, I've got burning sensation on my arms. It got worse during the day. I spoke to my manager and I said: 'I think I've got shingles'.
"He said: 'Okay, well, do you know what? You're a pain in the arse. I'll see you soon.'"
"That was the last time my manager had a conversation with me face-to-face. I think he probably meant it as a joke, but that's not a very nice thing to say to anyone," she added.
Martin ended up being medically retired aged 50, in 2018. Now, she is calling for reasonable adjustments to be provided as a bare minimum for disabled workers.
"Reasonable adjustments should be provided for people with disabilities because we're not stupid, we're not lazy, we're not idle. We're just wired up a bit differently to so-called 'normal' people," she said.
"But we have huge skills. We are fantastic problem solvers because every day problems come our way. We have to resolve problems in order for us to live our lives."
Martin, who was awarded both the daily living and mobility elements of PIP, said she has written to her MP warning of the dangers of removing PIP from disabled people who need it — whether they are in or out of work.
"For MS, when you're diagnosed with MS, it should be an immediate award of PIP support. That way, the pressure is taken off you," she said.
"We've all developed a disability through no fault of our own. We're not scroungers, we're not idle," she said.
"I was fit, I was healthy, I ate sensibly. And yet this happened. I've known people who have been diagnosed with cancer and other awful things, and it's nothing to do with the way we've lived our lives.
"We've been valid and capable members of the workforce prior to these cataclysmic events happening to us. And the narrative needs to change," she added.
A DWP spokesperson said: 'We will never compromise on protecting people who need our support.
'Our reforms will put the welfare system on a more sustainable footing, so the safety net will always be there for those who need it most.
'We have also announced a review of the PIP assessment, and we will be working with disabled people and key organisations representing them to consider how best to do this as we deliver on our Plan for Change.'

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