Shielding and looking to the future – Faye and Linda share their experiences

03 July 2020
Faye with her dog and Linda with her cat outside.

During the COVID-19 pandemic, thousands of people living with arthritis have been shielding and with the changing lockdown restrictions, we’ve heard from many people who are feeling anxious about the rule changes.

We're continuing to monitor Government announcements from each nation and will update our COVID-19 information to reflect the latest situation. Read the latest COVID-19 advice and guidance for England, Northern Ireland, Scotland and Wales. You may also find the following content useful:

We asked Faye and Linda who both have been shielding at home in England to talk about their experiences and what they hope for from the future.

“It’s positive to see that they’re taking things step by step.”

Faye is 26 and was diagnosed Axial Spondyloarthritis (AS) in March 2019 after having chronic pain for two years, and this is what she had to say:

There’s a broad range of people who are shielding and some may suffer mentally more than others, so the latest government updates give them support to prepare for what’s next.

I’m lucky, I’ve been doing walks every day because it helps my condition, although I’m nervous whenever I come across people.

I will go out gradually to build up confidence. Doing it all at once would be too much.

“I believe work would be COVID-19 safe, but workplaces are busy, small environments.”

I’d love to be in the office, but I’d be very nervous. 

I’ll go back later in the year regardless, because there’s already a phased approach being put in place where I work. I’ll also be working from home for half the week when I do eventually go back.

Having to think about your safety all the time is an added pressure to anyone’s job.

“It’s good that they’ve paused shielding because things are looking good at the moment and rates are down.”

We really need this for our mental health and the government has considered that. But if things peak, what’s the action plan to get people back on shielding?

If I do have to go back to shielding, I’d be happier to work with a specialist on tailoring something for me as an individual. For example, I’d have to come off treatment if I caught COVID-19, whereas others might not, so I need specific advice, as do other people.

We are all so different and I think we do need clearer communication from the government if a second lockdown happens.

“You get used to it as time goes on, but then you feel down when you realise that you haven’t hugged the grandkids for weeks.”

Linda has psoriatic arthritis and works for Versus Arthritis as a Living Well with Arthritis Service Coordinator.

At the start of it, I was very, very anxious, and worried because you’re being faced with something that could kill you – that’s the bottom line.

You get used to it as time goes on, but then you feel down when you realise that you haven’t hugged the grandkids for weeks. The lack of physical contact with people you love is really hard.

I read more about the virus and the symptoms so I could be more informed, and not just feel like a victim. Being informed helps me feel more in control.

I am in a privileged position – I have a garden, house, and I’m financially safe. But there are so many others for which 1 August is a cliff edge.

“I feel guilty as a shielded person because I’m affecting everybody in my household.”

We recently had the grandchildren over in the garden for my birthday, I knew I wasn’t allowed to touch them. Stuff like that is really hard, and I feel bad because everyone is making sacrifices for me. It’s tough.

I got this job during lockdown, so it’s not all been bad.

I’m doing something I believe in. I’m at work 4 days a week, which is giving me a focus, and I’m speaking to people who are struggling, and it feels like I’m doing something useful.

“The Government hasn’t made things clear to the general public about people who are shielding.”

Better communication and clear explanations of why it’s safe for shielding people to go out again is needed. I recently received a 4-page letter from the government on shielding, but it wasn’t useful information, it didn’t reassure me at all.

I wouldn’t feel safe going back to my physical workplace yet. The main message is that the employer needs to make the workplace COVID-19-secure – but what does that mean?

The only positive I’m holding onto is that with all the data collected, the government, can refine who needs to shield if there is a second lockdown, and the government has a better process for shielding people.

If you are shielding...

Remember, shielding guidance is just advice, meaning you can choose how to follow it.

If you are worried or uncomfortable about going outside, it may help to speak to a member of your healthcare team, such as your GP or rheumatologist about your situation.

For updates where you are, read our dedicated resources for EnglandNorthern Ireland, Scotland and Wales.

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