Chronic Illness · Facemasks · Invisible Disability · Invisible Illness · Pandemic

Why It Is My Right to Wear a Facemask – and Why It Isn’t Your Right to Question That

Hi Everyone – today’s post is an article I wrote a few months ago when certain restrictions were first eased in the UK. The article was supposed to be used for something else, but never was and it has since been sat doing nothing. With this said, I feel now that we are ‘Living with Covid,’ the issues I wrote about in this piece are still very much a factor for me personally and therefore I wanted to share them on the blog. Please note as this was originally written a few months ago, some of these references may be slightly out timescale wise.

It has been nearly a whole two years since the pandemic hit the UK with most of that time spent not being ‘normal’ – what ever normal means these days. The pandemic has had a major impact the world over for various reasons including on a personal, financial, social, business and most importantly health level. Yet, here in the UK we have seen restrictions lift as we came out of lockdown and in more recent times have been told to learn to live with Covid. Gone is the need to social distance or wear a facemask in certain situations, in fact it was advised to be a personal choice.

A personal choice which has thrilled many people who believe they have suffered enough and cannot endure anymore. A decision that regardless of your own beliefs has had to accepted as freedom of rights, individual choices and personal judgements. But what about the rights, choices, and judgements of the people who still choose to wear a mask and/or social distance, what and where are their rights?

I live with multiple chronic illnesses, one of which involves my immune system. I have been self-isolating since the pandemic started. The only time I have left my home is to go on short walks on the same route every few days (or when symptoms allow), and for medical appointments. I was lucky enough to be vaccinated, but the personal choice for my household and I is to wear a facemask to protect ourselves and others who may be vulnerable around us.

Going on the rationale of the rights to be unmasked, surely to wear a mask and social distance is our personal choice, our freedom of rights and our decision based on our experiences and individual beliefs – so why do people take such umbrage with that?

Photo by RODNAE Productions on Pexels.com

In the last few weeks members of my household have been challenged about wearing a facemask on no less than six occasions. These interactions have happened in various ways from subtle quips such as laughter and eye rolling to more hate driven encounters where people have been confrontational and aggressive. Let that sink in for a moment – challenged for wearing a mask. Questioned about why you want to protect yourself and others around you, like you should be ashamed to. Questioned by strangers who don’t know you from Adam, yet feel like they can pass judgement on your choice, all whilst you cannot dare to question theirs.

Those people still choosing to wear a mask have absolutely no effect on your day whatsoever. It doesn’t stop you doing anything or interfere with your plans or your so-called rights, so why does it affect you so badly? To a point where you want to be rude, dismissive, mocking and hostile – why does it get under your skin? Maybe because we are portraying that freedom of the public is actually only about the freedom of the unmasked, and when someone doesn’t hold the same mentality then it becomes a problem.

When you look at a person in a mask you have absolutely no idea what their reasoning is behind their choice, or what type of life they are living. To look at me I look like any other person you would encounter in the street, quite simply I don’t look ill. You cannot see the endless symptoms I am subjected to, or the internal battle my body is fighting. You don’t know why protection is so important to my health. In the same way you don’t know of the mental health struggle a person may be harbouring from having a pandemic rip through their life and therefore finds wearing a mask is the comfort blanket they so desperately need. A person whose job is to look after after the vulnerable and therefore who needs to be considering this when out and about. A vulnerable person who has no support or appropriate guidance from the government, and who are immunocompromised unable to create antibodies against a deadly virus. Nobody knows anybody else’s story, and nobody has the right to ask. Nobody is obligated to explain themselves; nobody should have to.

Quite simply if I have to accept your right to be ‘free,’ then quite frankly you have to accept my right to stay well and to protect my immunocompromised/chronically ill/disabled communities. That’s the problem with a pandemic you see it requires you to look beyond yourself. It means being able to value strangers, to be kind, to show support in situations that may not affect you directly, and to be respectful of all. The problem being some people are only capable of these things when it affects them directly, they show solidarity and bang on their pans until it is no longer their concern. Then it bores them, you bore them, so you find yourself standing alone.

The vulnerable communities and their families have to endure so much over these last few years, to be subjected to this antagonistic behaviour when people have ultimately got what they wanted shouldn’t be another thing to contend with. Freedom isn’t about a select few, it is about everyone. Anyone can become vulnerable at any point in their lives – so how would you feel if that was you, or someone you loved, and the response you received was to stay out of society or be ridiculed for the one thing that enables you to go outside.

I am not asking people to wear a mask because clearly, we are beyond that now; I am simply asking you to respect the people who do.

Sarah xx

Awareness · Chronic Illness · Fibromyalgia · Gaslighting · Invisible Disability · ME/CFS · Tourette Syndrome

Invisible Disabilities – Why Won’t You Believe Me?

This week is invisible disabilities week (17th -23rd October), so you guessed it – today I am talking about living with invisible disabilities.

Rather than talk about what constitutes as an invisible illness or disability, today I want to share with you a previous experience I had during my time living with invisible disabilities. This example is from many years ago when I was able to work and socialise – this is no longer the case as my conditions have developed since then, and I now have additional diagnoses and symptoms. Please note the disabilities I am referring to are Fibromyalgia, ME and Tourette Syndrome.

I check the clock again, oh crap it is 30 minutes later to the last time I checked – I must have fallen back to sleep – I am exhausted, my body feels like I am lugging another body around as well as my own, maybe another two bodies even. I am so late.

I get to the bus stop and can see there are no available seats in the bus shelter. They have all been taken. My body is struggling today already, I really could do with sitting down, but the seats are taken with people messing around, or on their mobile phones oblivious to the pain I am in. I hover around until I have no option, but to lean against a wall and silently deal with the pain.

Great, there are no seats on the bus apart from the side seats, the ones reserved for the elderly, those with mobility aids or with pushchairs. I hate sitting in them a) because the seats are too hard for my aches and pains and b) I can sense people judge. Today I sit there, I don’t have the energy to stand. I survive about 3 stops and then typical here comes a pushchair – a double buggy at that. I can sense people’s eyes on me and feel obligated to move. I find myself in the aisle of the bus along with other non-seat finders, a few who are noticeably older than me. People offer them seats and they accept. I am the only one left standing, no-body cares.

I’ve finally made it into work and to my desk. I feel relieved to be able to sit down without barriers. Today I have a lot of work to do and a lot of chattering workmates who don’t seem to know what volume control is. The sound is penetrating my ears making it difficult to concentrate, then a young woman in my team decides to spray some deodorant telling everyone she wants to smell nice. The smell invades my nose, eyes and throat, so I cannot breathe properly. When I mention it to my colleague it is brushed off under the carpet like I am exaggerating. The noise of the others is my team is getting louder, I ask my manager if I can move seats to a quieter spot and he looks at me like I am an alien from another planet. He declines instead telling me I need to learn to adapt to the noise levels around like I am making a fuss about nothing.

Photo by Katie Rainbow ud83cudff3ufe0fu200dud83cudf08 on Pexels.com

The day is extremely stressful with deadlines at every corner, I can feel the familiar build up in my chest telling me I need to tic. I am able to control it, but it puts enormous pressure on my body. I confide in my colleague who proceeds to tell me I don’t look like someone with Tourette’s and therefore why do I need to tic. The sad thing is I think she thinks she is giving me a compliment.

My fatigue and exhaustion are in full flow, but I arranged to meet my friend after work for some food. My whole being wants to cancel, but I have done this several times this month already because of my symptoms. She never buys it, she thinks I am lying to get out of seeing her. We meet up at her choice of restaurant – somewhere I have never been before – and notice there isn’t anything on the menu I can eat. She knows this I have told her before and I say it again now. She looks at me like I am lying – ‘what nothing at all? ‘Why don’t you try that or that?’ I tell her I can’t because of my stomach issues, she tells me she knew of somebody else who ‘claimed’ to be like me and actually they could eat these things, they had just convinced themselves they couldn’t. Needless to say, I left the restaurant extremely hungry.

My friend walks with me back to the bus stop, it is incredibly cold out and my circulation is struggling despite the layers and layers of clothing. I mention the pain I am in, and she tells me she has the same problem. What Raynaud’s I ask? No, she replies I just get a bit chilly. She also feels the need to mention I was way too quiet. I tell her my ME makes it hard to function let alone talk especially after being at work. She tells me gets tired, how is my ‘tiredness’ any different to hers.

Finally, I am back on the bus on the way home. I cannot wait to get home and to be able to eat and wrap up and call it a day. My head is banging, my stomach is griping, my pain is at an all time high partly from the cold, partly from the Fibro. My exhaustion is making me dizzy and nauseous, so I sit on the front seat. Other people get on, some are elderly and obviously feel I have stolen their space. I am asked to move, those seats are for the elderly or disabled I am told. I tell them I am disabled, but still move. I am told I am wrong because I don’t look disabled or sick, and that I should think myself lucky I look and am as healthy as I am. I feel embarrassed and fix my gaze outside the window, there’s no point arguing they don’t see it therefore they’re never going to believe it.

I collapse into bed, weak and defeated by the day. The saddest thing is I know it will only all start again tomorrow. The unconscious bias against invisible disability/illnesses. The problem being when people cannot see what is wrong with you or the symptoms you are harbouring, they tend to believe your symptoms are not as bad as you say they are, that you are exaggerating and is some cases may believe you are lying. They may think you are convincing yourself you are worse than you are, or in some scenarios believe it is attention seeking behaviour – all because they can’t see it and if they can’t see it, it can’t be real right?….

I hope this post helps in sharing the reality of invisible conditions, and the constant battle it is. What are your experiences? Are they similar to the ones I have described?

Sarah xx

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