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https://civilservice.blog.gov.uk/2020/08/25/personal-disability-stories-davids-shielding-story/

Personal Disability Stories: David’s Shielding Story

David with his daughter

In the latest of a series of blogs on the changes disabled colleagues have experienced due to the coronavirus (COVID-19) pandemic, we focus on shielding and the challenges it brings.

Many of our family, friends, and colleagues have been shielding over the last few months. I know that it has been a very difficult time for them and recognise the additional level of isolation and loneliness that it has caused. I have heard from many of you about how you have been struggling with shielding and how the easing of lockdown restrictions poses both exciting opportunities to reunite with loved ones after so many weeks but also new anxieties about when and how to resume a greater degree of social interaction. I asked David to share his moving account of shielding with his family. It’s important that we look out for our colleagues and reach out to those who may be struggling. I’m glad to read of the positive support that David has received from his managers to get the right workplace adjustments in place. We must ensure that everyone feels empowered to get the line management support and flexibility they need to look after their health and wellbeing.

David’s Story

Agents of shield: isolation squared

No, it’s not a foray into sci-fi, it’s been our life through lockdown. We’ve been exercising extreme caution, which my family adopted before it became fashionable (mandatory).

Fresh from my autism diagnosis specifically recommending I don’t work from home, my partner’s Crohn’s disease started to flare up. Her anti-inflammatory, immuno-suppressant meds stopped working, taking her from the high-risk group to shielding.

The chronic ailment plays havoc with her sleep, energy and mood- undoubtedly connected to the lack of nutrients being absorbed by her gut when it’s battling with itself after ingesting the smallest irritant. She needs to discover these one by one, using trial and error. Well, at least she isn’t neurodivergent, and has a tip top executive memory (sarcasm flag, she’s ADHD and proud).

Hospitalisation

The lowest point was when my partner was admitted to hospital when she started new, intravenous medication and was running a temperature. My admiration of NHS workers rose even higher when I saw first-hand a ward where infection was a distinct possibility. The experience was more vicarious, through video chats and waiting patiently outside the entrance after delivering some essential supplies on my bike.

Working

My manager and senior leadership team has been so accommodating with my new workplace adjustments, following an occupational health assessment I have moved to a new role that is more suited to my strengths in an environment I can flourish – I’ve been open with colleagues about how working in crisis response communication contributed to my anxiety and depression, heightening how my environment was disabling to me. I’m now playing to my strengths and building my confidence back after a second autistic burnout. In my new role I have more autonomy over my work, but I am still able to help people and make a difference.

I’m learning so much from the wonderful autistic community and celebrating my perfectionism, perseveration and conscientiousness! These things are so helpful to me and my organisational skills in many ways, but they can also be self-destructive. Until I knew they were part of my autistic way of being, I blamed myself for failing to meet the incredibly high standards I set, which affected my self-esteem. Now I’m free to experiment, to teach and to learn, I’m finding that massively inspiring and motivating. I can fly again!

I want to caveat much of this with the acknowledgement that throughout this we have had it better than some. I’m lucky to have a garden, and to have been able to build a self-contained office in it. It’s a wonderful oasis of calm, quiet and focus – admittedly it’s my man cave!

Delivery

Amidst all this, brown boxes full of food started turning up unannounced on the doorstep – thanks again to key worker and volunteer heroes. I rediscovered my deep love of bread pudding, not something we’d normally eat but we had a lot of sliced white to get through! Our gluten intake definitely increased while I was allowed in the kitchen.

Eventually, and with palpable relief, we were able to use the shielding status to get food deliveries. The excursions into supermarkets and busy areas had been fraught with anxiety and frustration.

Masking/Going Out and About

I find using face coverings a visual cue to ‘stay away’. Using medical style masks is a bit cooler than the buff or upcycled t-shirt we initially fashioned. As an autistic person I’m exempt from wearing one if I find I can’t manage it. Going without does seem to make me stand out, but then when has that ever been a problem?

The interesting thing is that masking is what autistic people do figuratively to fit in, seem ‘normal’ (whatever that is). And behind the literal mask I find myself beatboxing away merrily, stimming with percussive noises.

Learning

Looks like we’ll remain confined to home for the rest of this year.

I think my kids have suffered more than they’ve let on. Our eight-year-old is reluctant to leave the house at all, or to study. She’s even averse to video calling her friends until she starts speaking with them, then doesn’t stop for hours.

Our teenager is in her element, social anxiety is in check, and the duvet days haven’t particularly increased from pre-lockdown. But she’s had her eighteenth birthday in isolation – even for a recluse this is far from ideal.

Silver lining

Like the rainbow following the storm, we’ve great hopes that this newly enhanced social consciousness and conscience leads to a rebalancing of the world to be more sustainable, inclusive and kinder. There are green shoots in that respect. Let’s work together to nurture them.

I’m grateful to David for sharing his experience with us, the stressors and the moments to smile. For many, the kindness shown by volunteers and local support has been a chance to celebrate their local communities. For others, being able to communicate online has been a lifeline, keeping them in touch with those they are apart from.

Many staff networks have been valuable resources throughout this crisis, and I’d like to recognise the buddying programme for people shielding that the Working Through Cancer network have been running.  The Civil Service Disability Inclusion Team has also been running virtual coffee sessions for those who have been shielding to bring people together for peer support.

A wide range of staff networks, information and guidance are available to civil servants to support their health and wellbeing, including specific assistance and advice for during the coronavirus pandemic.

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9 comments

  1. Comment by Cath Labbett posted on

    Brilliant blog David!

  2. Comment by Dawn Edwards posted on

    Wonderful! A real insight! Thank you!

  3. Comment by Maxine posted on

    Great read David and pleased you are settling in to your new role too.

  4. Comment by Gavin Thomas posted on

    Thank you David for sharing with us your story. Despite the challenges you faced you were able to maintain a positive attitude. I commend you for this.

    It is also encouraging to hear about the flexible approach that your Line Manager and Senior Management have adopted to ensure that your skill sets match your role. A great example to others on the importance of being understanding and for having reasonable adjustments in place.

    Really pleased to hear about the acts of kindness, that have enabled you to cope through such a challenging time.

  5. Comment by Lisa Biddiscombe posted on

    Excellent blog - My daughter has been hospitalised during the pandemic with suspected IBS , your blog is so familiar, I am more aware that IBS affects mood swings depending on your tummy that day so totally have a much better understanding with what you are describing.

  6. Comment by Karis Gumbs posted on

    Love this blog post, David; I'm glad to see how well you've adapted and thrived both at work and at home (blurred lines, these days)! Very inspiring.

  7. Comment by Maria Partington-Moran posted on

    Loved reading this post David and good to hear about the support you have had.
    My youngest daughter was diagnosed with High Functioning Asperger's/ADHD last year and I really worried about how she would cope during lockdown as it totally changed her normal routine. She has done great though and I think having support from your employer makes a big difference, hers have been great too. Wishing you and your family all the very best.

  8. Comment by Elaine Carr posted on

    Thank you for sharing your experience David. Your words have given me some reassurance and comfort with my own situation. Best wishes to you and your family x

  9. Comment by David posted on

    Thank you for all your encouraging comments - lovely to hear that sharing my story has helped in some small way!