Chronically ill being stalked and denied benefits

On this day last year something very wrong and so unfair came to my attention: People with disabilities, who are deemed unfit for work by doctors and occupational health assessors, are being denied benefits because of their Internet activity. They’re being stalked, not only online, but in real life too!

In this post I will elaborate on some of my thoughts I’d shared online at the time. My heart goes out to anybody who has suffered unnecessarily due to such corruption in the benefits systems, not only here in the UK, but abroad too. I have spent some time in various international support groups online over the years since the onset of my ME/CFS and was shocked to read about people’s experiences of surveillance through windows and being followed.

This means that if the chronically ill applicant dares venture out and is spotted, it could seriously affect their applications for benefits. This is simply wrong on so many levels.

Does this mean that since we are unable to work due to illness, we also no longer have the right to live? No longer have the right to enjoy a rare occasion out or join social media so we can connect with the outside world without the negative consequences of going out and exerting too much? Despite the discomfort and pain we will endure during and after the activity anyway.

They know best

I’m sure the people stalking the chronically ill know exactly what they are feeling and how hard it is to focus, concentrate, put one foot in front of the other, get dressed, keep a smile on their faces even while they feel like screaming or collapsing from the pain and exhaustion, otherwise they’d not be able to make such life-altering decisions about people’s means of survival, right?

They know the sacrifices and pain we go through trying to experience a little piece of the normal life we once lived, the hard work it takes to try to hold on to the little bits of normalcy that we can still access on these very rare occasions. Who are they to judge? Hmm…

No choice but to push through

Not every chronically ill person has family, friends or neighbours who would be willing to drop everything, put their life on hold, and take care of our business. Things like the school run, grocery shopping, getting to and from doctor or therapy appointments, housework, cooking, taking the children to the park or friends because they shouldn’t be isolated by our illness too.

There are many single parents who have chronic illness and cannot be confined to their homes no matter how painful or detrimental to their own health the alternative might be. They do what they need to do to make the best life for their children at great personal cost. This doesn’t mean they are in any condition to be forced into work because of benefit cuts.

Stealth mode

Thanks to such discriminatory practices that we are now subject to, do we have to go into isolation, stealth mode or live anonymously online because if we dare show our faces anywhere in this world, it disqualifies us from receiving the benefits we desperately need? I find that shocking and utterly disgusting.

I’ve already lost a job I loved, many friendships, a busy social life, the ability to take part in activities I enjoy and am unable to contribute outside in the world, I haven’t even left my flat in 5 months, but now I also have to be careful not to appear active online either because this somehow proves that I’m well enough to go out and work? Utter rubbish!

Since I first learned about this last year, I I have tried to not let them drive such fear into me anymore. I have lived too long with the fear of losing it all and it only made me more ill. I became so isolated, hiding in my flat, and couldn’t even be myself online. They don’t realise how damaging these tactics are and I don’t think they deserve that kind of power over my health and well-being. They shouldn’t get to decide about things they have no experience of.

Enjoying social media

They don’t realise that in order to connect with other humans, many of us resort to social media as it can be done sitting in bed, reclined and propped with pillows and cushions, hot water bottle for pain relief, a cap or sunglasses to block out the light, dimmed screens, noise cancelling headphones on and silence around us. Not more than one person can be near me at a time without my symptoms flaring. Imagine an office job, retail or my old job in a primary school!

We are exhausted and in pain just from typing a few lines and need to take regular breaks. And all this was possible because we haven’t had to get dressed, brush our hair, do make-up, drive to work or even leave our beds – all of which would have required periods of rest to recover. They have no idea!

Pin "Stalked and denied benefits"
Pin “Stalked and denied benefits”

As if contracting or being born with a chronic illness isn’t punishment enough, we now have to exert our very low amounts of energy on the art of sneaking and hiding our very few social interactions and have to deal with constant worry and fear that somebody somewhere is watching and waiting for us to “slip up” so they can remove our benefits which we really need just to survive. Not okay.

Being ill isn’t cheap

There are food and chemical intolerances we have to deal with on top of our chronic pain and fatigue. Needing to buy special foods, cleaning products and supplements to help us cope and try to heal or at least manage symptoms. The National Health Service doesn’t pay for everything we need, it only pays for general tests and prescription meds that for many of us cause more harm than good, and the more specific or specialised tests are not covered either, so we end up paying for our healthcare out of our own pockets.

Many of us would be seriously ill, starving and homeless if it wasn’t for those benefits we receive. Mine don’t cover all my bills and groceries, only most of my rent. My poor family is covering all the rest. They’ve given up their life in another country to come be closer to my sister and I. My sister has dedicated the last 2 years of her life to taking care of me too.

I’m blessed with a family that would do that and parents who are able to still work enough to cover my expenses too, but this won’t always be the case as they age and many others aren’t as fortunate as me and are left alone.

Abuse of power

By forcing us to live in constant fear of losing everything, you are only punishing people who are already vulnerable and hurting, ill and too weak to look after themselves. Most of us would give anything to be able to go out and work and contribute to society again, nobody enjoys feeling ill or feeling like a burden all the time.

I’d go as far as to say that those who do feel comfortable not working and living on benefits are probably the ones who can work, but choose not to. The rest of us are ill by no choice of our own and out of thousands of people I have come into contact with online, I have yet to meet a chronically ill person who is happy to be relying on benefits and carers! They are usually fiercely independent and previously high achievers, yet are treated like liars and thieves.

I find it disgraceful that spending time online or occasionally going out for a taste of normalcy can be used as a reason to remove our benefits. We pay for every bit of socialising we do in the form of increased severity of symptoms, weakness and pain for days or weeks on end. In my opinion the discrimination and forced isolation against people who will likely be severely ill for the rest of their lives due to no fault of their own is unnecessary and should be counted as a criminal offence.

[thrive_custom_box title=”Have your say” style=”dark” type=”color” color=”#f4f4f4″ border=”#dddddd”]- What do you think about this?
– Have you been victim of such stalking or discrimination during your benefits application process?
– Have you been denied benefits based on your activity or appearance?

As much as these circumstances are common and difficult to accept, there are also many positive stories around benefit claims.
– Have you been successful in your application?
– What was your experience like and did you use any services to help you with your application?
I’d love to hear from you and even share your story if you think it will help others. Please get in touch![/thrive_custom_box]

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Chronically Hopeful
Chronically Hopeful

Char was born and raised in South Africa, but has been settled in Europe for over 20 years. She's passionate about finding ways to live well, despite chronic illness.

Apart from blogging, she enjoys art, cooking, reading, gardening, gaming and learning new things. She speaks English, Italian and Afrikaans fluently and is slowly learning French too.

She used to be a teacher, but has been housebound with Myalgic Encephalomyelitis since 2015. Since then, she's focused on spending the little energy and strength she has each day on the people and activities she loves. Finding joy in the little things and celebrating the ordinary.

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