On Saturday, 1st of August, shielding guidance in England comes to an end.
It’s been an extremely unsettling, unique and at times, dangerous period for the vulnerable and those living chronic health conditions. In this article, I wanted to capture a snapshot; the emotion and experiences of those who shielded for five months. To highlight how this is far from the end of us.
As well as sharing my own experiences, I have gathered the thoughts of Amy, Wendy and Aleta, who kindly agreed to contribute to this article. I want to take a moment to say thank you to everybody that got in touch to be involved in this; I couldn’t have done it without you. Let’s meet our contributors:
Amy Turner, who has been shielding since March and suffers from psoriatic arthritis.
Wendy Bryant, who has vasculitis and osteoarthritis and has been shielding since 21st March.
Aleta Doren, who has been shielding for almost 140 days with Interstitial lung disease, who is also a trustee of the charity www.icustepschester.org,
which supports patients and their loved ones following a stay in ICU.
What shielding has been like
Without question, shielding has been one of the most emotional experiences of my life.
I have gone months without seeing people I care about the most. My parents missed my son learning to walk, talk and feed himself. At times, I have been the lowest I have ever felt in my life. I have questioned my worth, purpose and more than anything, the burden I place on everyone around me when I am sick. I experienced inequality consciously for the first time.
I was unwell when lockdown kicked in and was receiving a lot of medical support. There was one week where I received five letters and phone calls cancelling appointments. One of those, I had waited 30 weeks only for it to be withdrawn a week before it was due. That was a low point. It was the moment where it sunk in how medically unsupported I would be during this pandemic.
A very real threat
Those first few weeks, I was an anxiety-riddled mess. It wasn’t just the concerns that everybody else had with shelves being emptied in supermarkets or worries over job security and paying the bills. My anxiety was higher than that. I was told that this virus was a threat to my life. I was paranoid of an invisible killer, and in those first few weeks, absolutely nobody around me understood the fear.
Along with those that tragically lost people, we, the chronically ill, sacrificed the most to make space for the sick through COVID.
There are a lot of broken people with chronic conditions now. So not only have we been in the most challenging situation but have lost the most in terms of support. I hope there’s a plan to ensure that the chronically ill and disabled get the help they now need. I am yet to see any evidence of one, however.
Amy: Surreal at first, Isolating, Infuriating, terrifying, so disturbing not hugging my teens and sleeping apart from my husband, it has been a rollercoaster of unpleasant emotions.
Wendy: Shielding has felt like a significant journey in learning about my own capacities and how I am supported by others.
Aleta: Shielding has tested me, my family relationships and my friendships on many levels.
How we feel about shielding coming to an end
In my article, ‘As shielding comes to an end…’ I talked about my mixed emotions over this move. How it was the light at the end of the tunnel we so desperately needed but also how normality felt so far away.
Just because I am allowed back out into the world, it doesn’t mean I feel safe. As a group of people, us shielders are incredibly anxious and paranoid. We’ve made far too many sacrifices to put ourselves at risk now, especially when nothing has changed with regards to a vaccine or effective treatment.
On Monday, the UK Government announced that from 1st August, those of us who have been shielding will be allowed to meet outside in groups and go back to work if their workplace is secure. It also means an end to statutory sick pay and the delivery of essential food […]
I have also expressed my disappointment about how we had sacrificed so much for such little gain. And today, while some people’s ignorance and self-regard manifests with packed beaches, crammed pubs or organising protests that could wait, we the shielded, are yet even to see our families in a garden for five months.
Shielding may be ending on 1st August, but I fear we could be placed on house arrest again within weeks. Thanks to the selfish actions of the healthy.
One thing we certainly didn’t gain is any more respect, understanding or appreciation from the wider population. The very people we made space for in the hospitals. The big hitters in the media barely mentioned us, with Monday’s news eclipsed in less than 24hrs hours because the pubs reopening was a greater public interest, apparently.https://joelvsarthritis.co.uk/as-shielding-comes-to-an-end/
Aleta: I am really anxious and feel vulnerable emerging into a situation full of mixed messages and misunderstandings.
Amy: Uncertain, underconfident and fearful, I have a lack of confidence that the wider public know how and why they need to keep shielders safe – a public health campaign could have improved this to help us feel more confident and improve awareness of our situation and the challenges we face. I feel changed as a person.
Wendy: I feel ok about it coming to an end. I have been living with fear of infection for over 3 years, so the next few months are another version, to me. Sometimes it’s best to feel the fear and do it anyway.
What we learned
Negatively, I learned that I could not manage my chronic condition alone. That I am vulnerable. I am different from the majority that didn’t have these restrictions placed upon them. Who my real friends are. Ones I heard nothing from in 5 months when I was in some of the darkest places in my life, frozen in fear, unable to reach out for help. I found my breaking point physically and mentally, but amazingly I never crossed it.
Positively, I learned that my wife and young son are my motivation, the reason I get out of bed in the morning; my support network. I found peace in my family and my writing.
I discovered people who I completely underestimated how much they cared for me. Who checked in without any reason other than to see how I was doing. To give me an opening to talk. I appreciated how much I loved my job through the pain I felt for not being around when I was needed the most. I spent five precious months with my boy and watched him grow from a baby to a cheeky, bright toddler. I learned that I was a role model, regardless of the low opinion I held of myself throughout.
The resilience of the chronically ill
More importantly, I learned that I was far more durable and resilient than I ever gave myself credit. That although my body may be some way from optimal, my mind can take on the greatest obstacles. In a world where society often sees the chronically ill and disabled as a burden or weak, we’re the toughest people you know. We climb mountains each day to do what others take for granted.
For we are the shielded.
A forgotten corner of society deemed too weak to risk.
And even though we forwent our treatments to make space for the sick,
We curried no favour, gained little coverage.
There was a window of opportunity, a chance to really experience.
How lockdown gave a taste of disability and how we have to live.
But the time when we were ‘in this together’ has now seemingly passed,
As people go back to normality, the shielded are left at home. The outcasts.The Outcasts – Joel Nelson
Wendy: I learned that I need other people to help me with many things. I relearned that my vasculitis is a maverick disease, unpredictable and unaccountable. I learned that many people are finding the lockdown much harder than me because they faced challenges I’m really familiar with.
Amy: I am resilient. That we are a resilient family unit and the time has reinforced what an amazing husband and kids I have. I learnt that during this time the government concentrated on the needs of the majority, for example, the people that absolutely needed to get out and exercise the most were the last. I learnt the same of the media, that coverage for the issues that impacted the majority was the most important. I felt marginalised, ignored and shut away.
Aleta: I learnt a great deal about resilience, and the comfort of being supported by a loving family.
How it impacted our medical condition
Shielding caused me to take an involuntary rollercoaster ride of challenges and emotions with my arthritis and chronic pain. I was signed off work in February, so when lockdown came into force, there was only one way my health was going to go.
As my wife worked tirelessly in a hospital, and my son had to shield at home with me to reduce my risk of exposure, my issues multiplied without the help of family or childcare. By April, I was crying during nappy changes due to the pain in my knees and fingers. By May, I was on crutches and having to carry my son up and down the stairs dangerously unsteady on my backside.
It was the first time I had cried in front of him, and it broke my heart. I did the best I could in difficult circumstances, but even to this day, I feel like I failed him during those 2 or 3 months.
What I didn’t predict was the impact it would have on my mental health. I experienced panic attacks for the first time. I became increasingly depressed, irritable and flat. I thought about suicide. Not because of shielding itself but because of how bad my disability became. The burden. The uselessness.
Imagine breaking your leg and being told there were no doctors to fix it. That’s how I felt every single day. I have never been in so much pain. I have never felt so alone.
Amy: Massively. After being in the house from March to June my arthritis has deteriorated, the pain exacerbated. I have been proactive in exercising indoors however my physical strength has deteriorated and despite my best efforts my weight has increased making all of the above worse and, as it turns out giving me another risk factor.
The impact on my mental health has also been massive, with anxiety and isolation. All of this while sleeping alone, eating apart and no physical contact with the ones you love and live with – it adds up to a nightmare scenario that I think only those who have done it understand.
Aleta: I have made every possible effort to improve my medical condition – I have changed my diet and cycled over 2000km on a static bike to strengthen my immunity and improve my lung function.
Wendy: My medical conditions have been easier to manage in some ways, because I have been living a calmer and quieter life. But my vasculitis and osteoarthritis remain a problem regardless of the pandemic. Medication issues were not easy but they never are. I had good support from GP and hospital, and my rituximab went ahead as usual.
What are our plans for the rest of 2020
Plans? That’s a sore subject for me. I don’t feel like I can make any plans until I see a government plan for the shielded going forward.
If I had a choice, I would like to make the most of the last remaining days of summer where my wife and I are not working to take Dylan out to see the world. I looked forward to this summer last year full of joy. Dylan has just turned 18 months old, and I wanted to take him to the sea, zoos, parks and all the other places that will blow his mind at this tender age.
2020 feels like it has not only stolen from me and my long term health, but my time as a father with my son. I have never felt as guilty as I have these last five months as my little boy was stuck at home with me. He was at the age where he was starting to make friends at nursery, build relationships with members of the family. I worry about his social skills. Hell, I worry about my social skills after all this!
If I am permitted to dream as big as having my freedom back at some point in 2020, I plan to continue being a better father. A father that isn’t tainted by pain, physical disability and mental torment. I want to smile. Be happy. Love things again. Rediscover my confidence.
I’m currently receiving cognitive behavioural therapy, pain management therapy and disability adjustment training to achieve this. I’m trying everything within my power to fix my broken body and mind that a virus I am yet to contract damaged.
Aleta: I imagine my life will be extremely restricted for the foreseeable future (I intend to continue to shield myself after 1st August – on medical advice).
Wendy: I don’t have any plans except to work out how to see my adult children, as I have not seen them since February, the longest time ever. And maybe go away with a friend, not far, not for long, last minute. Otherwise, I’m staying at home and staying safe.
Amy: To keep safe, to minimize my risks, to rebuild my physical strength. To look after my mental health. To provide my kids with some form of normality in the house and look after their mental health. Shielding has impacted them massively too.
I am so fearful that our privilege to live normally in our own home will be taken away. I have no plans to return to shopping, eating out, concerts etc.
The shielded must not be forgotten
I will conclude with this.
There has been no media coverage of shielding ending this week, no public health campaign or government posters flooding social media. More importantly, no plan.
No plan for the tens of thousands of patients awaiting life-changing treatment or operations. In some tragic cases, these delays are the difference between life and death. No plan for those who will lose their jobs as employers ask them to return to an unsafe workplace and they put their health before their financial security.
No plan for how we undo all of the damage we have suffered as a result of our conditions being left untreated for five months while we made space for the sick. No dedicated support for the physical and mental scars of shielding that we have all, in some way, nursed. All while we sat at home obediently and watched the rest of the world do their own thing.
We followed the rules, rules far stricter than most. We gave up our regular treatments and sacrificed considerably more than the average person on the street, the street we haven’t been able to walk for five months. So I suggest that for those of us that were the first into lockdown and will be the last to turn off the lights at the end of it, we deserve better.
We deserve not to be forgotten.