The pandemic has brought about so many problems for so many people. Obviously, the biggest one is Covid-19 itself and the fear and anxiety attached to it. But some of the other problems have been distressing and overwhelming for people, especially amongst the chronic illness community.
Pandemic Problems – Masks
It’s been proven that masks help. They help me to protect you and they help you to protect me. However, there are some health conditions, including trigeminal neuralgia, which can make mask-wearing difficult.
Different Styles of Masks
If you struggle to wear a mask, shop around for different styles because some might suit better than others. If ear loops bother you, try masks that fasten at the back of the head or use ear savers. There are also various styles of face shields that might be more comfortable. They don’t offer as much protection, but if mask-wearing is a problem, they are better than nothing at all.
If you can’t wear a mask or a face shield and you really need to go out, wearing a scarf or a bandana might offer a small level of protection. A small amount of protection is better than none.
Often forgotten in the mask debate are people who are deaf or hard of hearing. They often rely on lip-reading and of course, when people are wearing masks, that will be proving difficult. They might need to ask someone to remove their mask in order to understand them. If you’re with someone with hearing problems a lot, perhaps a mask with clear plastic section or a face visor would help.
There are, of course, many people out there who just don’t want to wear a mask but we need every bit of protection we can get from this virus. So, unless you have a valid health reason, please wear one.
Pandemic Problems – Loneliness
Many people who live with a chronic illness live with a companion. A companion called “Loneliness”.
I’ve written about it in the past – Silent Symptoms of Chronic Illness, Loneliness and Isolation
That companion became more forceful and domineering during the pandemic.
People without chronic illness have been affected by loneliness too. But they have the knowledge that when the pandemic is over, their lives will likely return to normal. But for many people with chronic illness, this is normal.
I asked a few chronic illness sufferers on Twitter if the pandemic has caused more loneliness.
Caz from Invisibly Me wrote: “My health has struggled far more in tandem, and in those times it’s felt colder, more lonely, with having nobody to turn to outside of my home.”
CVIDIVA wrote: “After being diagnosed with CVID in 2017 my entire world shrank due to risk of infection and sick all the time. Then when COVID hit, my world shrank even more. I didn’t think it was possible but boy was I wrong!”
Ruth Tudor wrote: “I’m not sure. At first it didn’t bother me, I’m an introvert, I’m built for this isolation malarkey but I’m definitely finding life harder but I’m not sure why? I think it’s the loss of freedom and the despair that we are still doing this so many months on?”
Penny from Hope Found in M.E. wrote: “I think the situation has highlighted how many don’t understand how many CI folk already live an isolated life.” Penny has also written on her blog about loneliness due to chronic illness. You can find her post here.
Pandemic Problems – Carers
Many people with a chronic illness rely on carers coming into their homes on a regular basis. Obviously, that brings risks during a pandemic. However, with many carers needing to self-isolate, schedules need to change regularly (often at short notice) and a different carer is sent.
Patients and carers develop a relationship. A bond. There needs to be trust and understanding. Carers often have to help with very personal needs and having a new face arrive unexpectedly can be daunting, upsetting and possibly embarrassing for many people.
Pandemic Problems – Shopping
We can get supermarket deliveries, but it’s not always possible to get suitable delivery slots and, besides that, everything we need doesn’t come from a supermarket.
During the pandemic, supermarkets, pharmacies and all other shops (rightly so) are following government guidelines on social distancing and only allowing a set number of people into the store. This often means standing outside waiting in a queue. If you’re lucky, you might only need to wait for a couple of minutes. But if a shop is busy, you might have to stand in that queue for much longer.
Many people with a chronic illness cannot stand in queues for a long time. My back pain will not allow me to do that and my trigeminal neuralgia would get very angry if I was outside in freezing weather. I’m lucky because my husband can shop for me. But not everyone with a chronic illness or chronic pain has someone who is able to help them.
Pandemic Problems – Dietary Restrictions
Having a special dietary requirement has its own problems during the pandemic.
Many supermarkets made a “don’t touch unless you’re going to buy it” policy. As a coeliac, I have to read labels on everything I buy to check that nothing contains gluten. It is the same for anyone who has a serious dietary restriction. But if we want to check a label, the shop wants us to buy the product. I don’t particularly want to buy something I can’t eat.
At the beginning of the first lockdown, people went into panic mode and left supermarket shelves bare. When there was nothing left, they took the gluten-free flour and pasta too. They probably hated it and binned it. But they left those of us with coeliac disease without. Thanks for that.
Eating out or getting a takeaway meal also became a problem. Restaurants and takeaways often ditched their gluten free menus because of staffing problems or because they’ve had to try to cut costs. It’s understandable, but many people with coeliac have felt they’ve had to miss out.
Pandemic Problems – The Things People Say
This pandemic problem doesn’t just annoy those of us with chronic illness. I know it upsets the majority of the population.
Conspiracy Theories and Horrible Statements
Every day, on social media, people (including people who should know better) write crazy conspiracy theories like, “it’s not real”, “there is no virus”, “the government is trying to control us”, “it’s just the flu” or “it’s fake news”.
Covid-19 is real. It is dangerous. It is not the flu. There’s nothing fake about it.
I also regularly read this – ‘I don’t know anyone who’s had it” and all I can think is, you are lucky. I’ve lost relatives to it. I’ve almost lost others. Friends and relatives have lost loved ones.
Just because you don’t know anyone who’s had it doesn’t mean it’s not real.
“Just Lock the Vulnerable Away”
But the comments get worse. Some people are annoyed, even angry, because they are affected by the lockdown when “the virus only affects the elderly or people who already have an illness.”
I’ve even seen this, “just lock the vulnerable ones away until it’s over and let us get back to normal.”
“Destined to Die Anyway”
But the big prize goes to – “they’re destined to die soon anyway, so it doesn’t matter if they get it.”
How are the elderly and people with chronic illness supposed to feel when they hear statements like that?
Our lives don’t matter. We’re dispensable. Superfluous to requirements. That’s how.
We Are All Worthy of Surviving the Pandemic
Are we not worthy of getting through this pandemic too?
Yes, we are. Everyone is.
Besides that, they’re wrong. The elderly and people with chronic illnesses are more at risk, but Covid-19 doesn’t only affect them. Young, fit and healthy people have died from this virus. Others have been seriously ill. Many who’ve survived it have been left with chronic health problems.
This is real. It affects everyone.
That type of attitude is making the whole situation worse.
There is Hope on the Horizon
We now have hope on the horizon as the Covid-19 vaccines are being rolled out. However, it’s going to be a long time before everyone who needs it will receive it so the virus is going to be around for a while yet.
I know a lot of people are concerned about the speed at which these vaccines have been made. But we couldn’t sit around for 10 years waiting, could we? Instead, the world got behind the scientists, provided the finances and opened doors quickly. This is an interesting article by a clinical trials doctor which will hopefully help to put people’s minds at rest.
I’ll be happy to take a vaccine when it’s made available to me.
Until an adequate number of people are vaccinated, we all need to listen to doctors and scientists. We need to help each other by getting tested if we have symptoms, isolating if necessary, observing social distancing, maintaining good hygiene and wearing masks.
It’s about being respectful. It’s about doing the right thing.
Protect each other and stay safe, everyone.
Some really good suggestions with the masks and face coverings. I’ve seen those clear masks on eBay, which are so important for the deaf and those with impaired hearing. I feel awful for those having to go out who can’t hear, where staff in shops or hospitals probably should be wearing something with a clear window so as to be more accessible. I absolutely think masks are important and I agree with you, unless there’s a valid health reason you’ll be doing yourself and everyone else a favour by wearing one. I just don’t understand this “I won’t wear one” and “I won’t be told what to do” attitude. It help nobody.
Loneliness is a big issue for so many even prior to the pandemic, so it’s unsurprising that it’s escalated this year. It’s painfully sad to think how many feel alone, and I’m grateful for the online world for helping bring so many of us together. I just worry about those without the internet or who can’t use a computer, which sadly again often affects the disabled communities and the older generations.
“I also regularly read this – ‘I don’t know anyone who’s had it” and all I can think is, you are lucky” – Absolutely. It’s like that ‘does a bear sh*t in the woods?’ thing. Just because your immediate world is not affected by Covid, it does not mean it does not exist. It means you and those around you are very lucky. Even being as careful as we can be doesn’t guarantee us protection from the virus sadly.
As for stuff like locking the elderly and vulnerable away, which I’ve seen said on social media, it just makes me absolutely livid. How dare people value some lives less? How selfish some people are for thinking their ‘wants’ for things like the pub or a coffee shop or fun in the sun on holiday are worth more than the lives of others. I just can’t… I’ve never been a bitter or angry person, but things like this have changed me. I feel more anger than I know what to do with.
You’ve done a fantastic job highlighting so many poignant areas so many are struggling with during this pandemic. It really helps to be mindful of the potential issues and to be supportive of others because we don’t know what they may be going through. Thank you very much for including my quote, too. I really appreciate it, and it’s good to get a sense of how other people are experiencing these issues too.
I think if I did a post like this it would drive me mad. I’d be so angry and disheartened by it all, and yet you turn this around nicely. There is hope, we can be more compassionate towards one another, and we all deserve to get through this. Amen to that. Hopefully there is some light around the corner now. We just have to hang in there a bit longer.
A fantastic post, Liz.
Stay safe & as well as possible ♥
xx
I will never understand some of the attitudes we’re seeing right now. I think my eyes have been opened over the last few months. I think it’s a little bit like racism. People say they’re not racist, but then something happens and their words or actions show they are. This year has taught us that a lot of people aren’t as kind or as tolerant as we’d have expected them to be. It’s pretty sad.
Thank you , Caz,so much for your lovely, thoughtful comment.
PS. So sorry for such a long comment! 😂
Your comment was great, thank you!
It’s such a relief that while we have a ways to go yet at least progress (vaccine) is in sight. I only hope that my doctor is okay with me getting it
It really is a relief. I also hope your doctor is happy for you to get it.
It frustrates me a lot when people say ‘but they had underlying health conditions’ when referring to the loses and long term illness through Covid. Like it’s expected anyway and doesn’t matter so much.
Having carers in while I’ve been shielding has been hard. Most people can be responsible for themselves and know where they’ve been etc, but relying on close contact from others is stressful.