A message from our founder.
Having children with a health condition and my hope for the future.
I do not live with a health condition; I do not really know anything about living with a chronic health condition or disease. I do not have to do treatments, take medication or spend time feeling unwell. I do not have to fear viruses and bugs as much as those who live with health conditions do. I do not have a health condition but two of my children do. They have a condition called PCD, which is a rare genetic condition that causes recurrent chest, sinus and ear infections. The recurrent chest infections often lead to irreversible lung damage (bronchiectasis) there is no cure and managing the condition becomes part of everyday life. Physiotherapy, nebulisers and antibiotics daily. PCD can also cause hearing loss and other ENT issues, my daughter wears hearing aids and my son has lots of issues with his ears and is currently waiting for an operation.
“This is not life limiting but it is life changing.” This is what their consultant told me when we finally received a diagnosis in 2018, I did not really understand what that meant at the time but now I do.
In March 2020, my son was admitted to hospital for two weeks of IV antibiotics, which is not unusual, last year we had four admissions; oral antibiotics are not always quite enough to get rid of some of the bugs they grow in their lungs, luckily, we have now been trained and can administer them from home which will make things a lot easier moving forward.
March 2020 was a little different, Covid-19 was just starting to become a problem here in the UK and everyone was beginning to feel a little anxious. At the time no one was wearing masks and social distancing was not in place. The day after my son came home, we received a call from the PCD team to tell us that he and his little sister were on the shielding list and had to stay inside for at least the next 12 weeks. 12 weeks seemed like an awfully long time, but we did not really mind, we felt safe, we felt in control and we felt we were in our own little protected bubble where nothing could harm them. Their dad stopped working in order for us all to shield with them and we did not leave our house or garden for three months, we learnt to cook new things, we grew vegetables, we fixed everything that was broken in the house, we completed Netflix, we played games, we laughed, we cried but most importantly we realised that time together was the most important thing in the world and just how lucky we were to be safe at home, to not have to go to work, to shops etc.
There were times where we drove each other completely mad and were all desperate for some normality and to leave the confines of our garden. The fear during those weeks when we were shielding was at times completely overwhelming, as a parent with children with a health condition the worry consumed me, the guilt you feel on a day-to-day basis is sometimes hard enough to bare let alone the guilt and fear I now had thinking this new virus could make them seriously unwell at the time. I will never forget how although we have some lovely memories during those weeks just how terrifying and how the fear of the unknown hung over me like a suffocating shadow.
We were told at the end of June that most children do not seem to suffer badly with COVID-19 even those with serious underlying health conditions. This was positive news, and I did feel slightly relieved. The children were removed from the shielding list and we were told to follow the national government guidelines. Things became a little more normal but we were still extremely careful, even if it was probably not going to affect them badly none of us revelled in the idea of catching it. We still had our shopping delivered when we could, and avoided restaurants, pubs and other busy places, something which is not unusual for people with health conditions to do especially in the winter months, something I was shocked to learn that the general public did not seem to understand. I assumed naively because my children had a rare disease that was why people did not understand when I said they were unwell or when people were shocked at the number of times a day, they spend doing treatments. Now I think about it I would be the same if I did not have children with a health condition, I did not understand it, or in all honesty think about it before their diagnosis, which now makes me feel a little embarrassed.
The lack of education in the UK around health conditions needs to change and it needs to change now in order for everyone to comprehend a little of what it is like, nobody is exempt from having a health condition or disease, you never know when it might affect you or someone you love, I truly believe it is so important that as a society we ensure that future generations do understand.
ShieldUs was born out of my hope to raise awareness, education and provide support for people with health conditions. When my children were shielding, my son was incredibly anxious and irritable the first time we went for a walk he asked his dad and I ‘how will people know I have a condition when I look healthy’. I did not have an answer. Invisible conditions make up a huge proportion of people who have health conditions, Covid19 made me realise how extraordinarily little education and understanding there really is in the UK regarding invisible conditions.
Although my children have not been on the shielding list since June 2020 it has not changed how I feel, in fact all it has done is spur me on to keep trying to raise awareness, education and provide support. The way people with health conditions have been treated throughout this pandemic is nothing short of a human rights violation.
The media reporting daily how many people died with a health condition as though this makes it acceptable and somehow less tragic. Members of the public across social media commenting that its only the old and the sick that are at risk, ‘lock them all up and leave the rest of us to it’. Lock them up as though they are subhuman, not contributing members of society, not someone’s family or friend, why have the media, the government and the world not explained that hundreds of thousands of people who have health conditions manage their conditions daily, go to work, live lives the same as everyone else who does not have a health condition? Why have people with health conditions been forced to return to work throughout this pandemic when they have not felt safe? Why have they had to chose between keeping a roof over their head and their health? Why have so many people only been offered statuary sick pay when shielding, when having a health condition is no fault of their own? They did not start the pandemic; they did not choose to have a health condition. Why is there little understanding a year into this pandemic that people of all ages are at risk?
My biggest fear as a parent of children with a health condition is what if another pandemic happens in their lifetime? Which is looking entirely plausible judging by the way we continue to abuse the planet we call home. Will my children when they are adults be treated with the same blatant disregard as the millions of other adults this time? Will the world change enough that people understand that they need to be protected from bacterial infections and novel viruses? Will anyone even care? Will they have to fight to feel safe and understood? Will they be made to feel dispensable and unimportant? Will they still feel the stigma that millions of other people have living with health conditions?
The past year has not only taught me how much needs to change regarding the understanding of chronic health, but it has taught me just how incredible these people truly are, the strength and resilience people have shown all whilst battling health conditions has not only inspired me but also my son. If he and my daughter grow up with the same fight, determination and bravery as the people I have met then I know they will be okay.
The narrative needs to change people with health conditions are not vulnerable, they may be at risk but vulnerable just is not the right word, vulnerability is defined as “the inability to withstand the effects of a hostile environment”. From what I have seen everyone who is at risk has withstood the effects of this hostile environment with every ounce of their being and have continued to fight not only for their rights as equal human beings but for their right to life by respecting every single rule put in place, even though shielding has been tough mentally and physically. As a society we owe these people a great debt and the way we can repay this is by ensuring that going forward there is no stigma to having a health condition, that we ensure we treat people with respect and humility and above all ensure we protect those who need it the most, it must become priority.
One day my children might be the people that need it most and I wish with every fibre of my being that this pandemic can teach us one thing that we must look after and understand each other better, if not then how can we entertain the notion that we are superior, intelligent beings on this planet? For without empathy human morality is unthinkable.