Joel and his son, silhouetted on a beach in the sun. Playing at the water line.
Shielding Mini Series

My chronic illness shouldn’t impact my child – but it already has

On days like this, parenting feels like the hardest thing in the world. I’d rather take a punch in the mouth than watch my son, Dylan, be torn from my arms screaming ‘Daddy, daddy!‘ irrationally at the doors of his marvellous nursery. I’ve always thought my chronic illness shouldn’t impact my child, but today I discovered in the most upsetting way, thanks to shielding, it already has.

Shielding changed us

He used to love going to nursery. He was always bossing the room, owning it like Freddie Mercury owned a stage. Now, because of a cruel mix of shielding and my poor health, he’s grown quite attached to me.

My time being ever-present with him at home in 2020 has brought some incredible moments in this crazy year, but it has its consequences. Consequences that hit you like a cricket bat to the chest.

We’re only a few weeks into his return to childcare post-lockdown in the UK, so a little anxiety and resistance was to be expected. However, as the weeks have gone on, he’s grown wise as to what is happening. We get out of the car, and he starts clasping onto my skin much as a baby chimpanzee holds onto its mother. You can feel his body tense as fear emits from him. The difficult part is typically when I hand him over to one of his carers. Today, it was as soon as they answered the door.

Mental health impact

I’ve written a great deal about the need to support the mental health of those who were high-risk and shielded in their homes for five months during the Covid-19 pandemic. What I didn’t give enough consideration to was how far-reaching that impact would be beyond those that were locked away from society. The effect the situation had on our children, those that depended upon us, including elderly relatives. Others in the wider family unit.

Shielding strained even the strongest of minds, and in some tragic cases, it broke people. I know it pushed me pretty hard at times, and I had a garden and shared my home with my wife and son. I can’t begin to imagine what that was like if you lived alone in a tower block, for example.

What’s important to understand is that the effects of that experience continue to push people to their limit, even though the guidance has long since ended. Whether that be financial pressures from losing your job or home (especially from today as protections that were brought in to stop people being evicted come to an end), the scars of what we went through, the isolation or the fear of the virus itself. For some, it’s just the thought of shielding being brought back into force – a prospect that seems ever more likely as we approach October.

Sometimes, that strain is as simple as seeing how shielding changed your child, as was the case for me today. It’s a constant reminder of the sacrifices we made.

The impending mental health crisis off the back of shielding and this pandemic is like a magma chamber bubbling just beneath our feet, and the cracks are already starting to show. As everyone looks to COVID, it’s that mental health eruption that will blindside us and do the most long-term damage to people. People that were already managing complicated health conditions.

People are finally talking about this potential crisis, thankfully, but I don’t see any sign of a plan as yet.

A reminder from the past

What makes this experience with my son even more upsetting is that it’s a brutal reminder of all the nights I spent left in a children’s hospital ward as my poor parents tried to split their time between me, my health challenges and my brother and two sisters. I don’t know how they did it, and I have a whole new level of respect and appreciation for them since becoming a parent.

At the time, I remember feeling like a piece of a jigsaw that didn’t fit. An inconvenience. A burden, and it was these feelings that shielding accentuated the most for me.

Discriminating under the guise of support

Today’s incident was a result of how the ‘high-risk’, the sick and the chronically ill were treated during the pandemic. I completely understand why we were told to stay at home, and I followed it to the letter, but the way we were discarded at the end of that process was wrong. How we were told that 31st July was not safe, but 1st August was. With no transition or support.

When we all know, it was because people were needed back in their jobs again. Healthcare professionals who were shielding and to stimulate the economy, primarily.

At the start of shielding, I was the plan’s biggest supporter. When it ended so abruptly, I realised we were just paid lip service. We were put in a box until somebody could figure out what to do with us, or there were enough hospital beds to accommodate our conditions again.

It was discrimination under the guise of support and far wider-reaching than simply those at high risk.

I understand it was a ‘once in a 100-year event’, I do. But at a time when our governments were telling us we were at the most risk, their answer was to shut us away as the Victorians did the mentally ill in asylums when they didn’t know what to do with them. It was discrimination under the guise of support and far wider-reaching than simply those at high risk.

Don’t bring him into it

I know that all parents struggle with these little chapters in their little one’s development, regardless of a global pandemic. But this feels like yet another thing that was the result of me living with arthritis, my poor health that I certainly didn’t ask for, and it’s not right.

After being told Dylan had to shield with me for the full five months – no childcare, having to wave to grandparents from the front door until it became too upsetting for him, not allowed any further than our house and back garden – it was always going to be extremely difficult to transition him back into normal life when he was just 18mths old. At the time, he had spent almost a third of his life stuck in the house with me. But to do it without any support and with a flick of a switch, ending the guidance overnight, was incompetent.

If my autoimmune disease wants to f*ck my life up, then give it your best shot. I’m certainly not going to make it easy for you. But our leaders shouldn’t bundle my child’s life in with me just because I’m dealt a bad hand. He still has his innocence, unmarked from life – his whole future in front of him. Why should my health handicap him?

Like thousands of others, shielding has forever changed me, but it shouldn’t have impacted our children. There should have been more support for those around the shielded person as well as the most vulnerable themselves. There should have been more support full stop.

As people living with disability and significant health challenges, who have now been conditioned to be fearful of every person they pass in the street, don’t you think we’ve suffered enough?

3 Comments

  1. Oh heck no. I mean in my day as a young parent I had to carry discarded diapers 23 miles in sub zero temperature to official disposal site, with no car and if that was not bad enough, I had to make that same trip each day in the heat of the summer.

    Cue the violins,

    Yes you are right feel like i had it much worse. 🙂

    teasing of course you are right.

    rick

  2. Sadly the government have never and will never care about disabled people, if they did they wouldn’t sanction their benefits and cause 130k deaths in 10yrs

  3. Stay strong … you will find the strength … keep going I’m personally using this time to research a lot more into natural therapy’s have being on a lot of strong medication in the past .. And I’m finding it hard to gain support as an invisible condition its hard to find the right support

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