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Pain Chronicles: Right Now, I Need the Sunflower

Pain Chronicles is a monthly(-ish) column from Caroline McDonagh-Darwin about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown in chats with her mum Shaz, and other friends too, along the way.

When mask wearing became mandatory in July last year, I was mostly still not leaving the house. We’re a high risk family, and I felt the government were too hasty in unlocking everything.

When I did have to pop to the shops, I’d don a reusable mask (trying to combat waste) and more often than not I’d only just finish my shopping before having to run outside to fresh air to stave off a panic attack. Face shields were slightly better, although they did elicit some funny looks, and there was still an issue with allodynia where the sponge rested on my forehead.

It got better with the introduction of what I call “a face jockstrap”.

Don’t panic, it’s a little plastic bracket almost in the shape of an oxygen mask but with just a frame of the outside and a cross through the middle  (pictured below). It goes inside the mask and leaves you more space to breathe. Between this and the oncoming cooler temperatures, I managed a series of very stylish masks throughout autumn and winter and into spring.

Masks in winter were something of a revelation. For years we’ve been having the issue of the scarf only coming so high and the hat only going so low and the nose being left in a freezing cold no-mans-land but no longer. Masks solved that (unless you’re one of those who doesn’t put their nose in their mask. It’s the same airway, people!).

But as the hot days creep back in, the problems I’d encountered with my early mask wearing follow close behind. Additionally, fibromyalgia often comes with heat intolerance, leading to an increase in fatigue and headaches, and also anxiety. And god knows I have enough of that.

I’ve been in discussions with Rachel for a while about getting a Sunflower lanyard.

It’s important to note here that these lanyards, along with other ways of displaying the sunflower as a symbol, have been around since way before Covid-19 – they’re used to indicate a person has an invisible disability and to make people aware of that, and are particularly useful at airports.

It’s been an unfortunate side effect of the anti-mask brigade that this symbol of inclusion has been co-opted by Covid-19 deniers, which is probably why I’ve been struggling to get my hands on one at the minute. But the symbol of the sunflower lanyard is an important one, no matter what the conspiracy b*stards try to turn it into.

My own foray into the sunflower symbol (I don’t have a lanyard, but I did attach a little key fob to my dress with a pin badge) may seem strange to some, I’ve been masking up since August or so with little problem, but it’s important to realise that mask “exemption” (a weird term that doesn’t seem to be enshrined in law, and also isn’t what the sunflower symbol is about) is not all or nothing.

I managed a mask for the better part of 9 months, but my disability means masks in the heat have a very big effect on me. As long as the heat sticks around, I’ll not be able to wear a mask. I’ll put one on to pop in and out of the pharmacy, or in a medical setting; and I might even start my big shop wearing one or wearing a face shield that I have to remove once I leave the fridge section. Because that’s what I need to do.

Mask wearing is still important, even if the UK government are removing it as a requirement soon. Masks (not unlike vaccines) protect those around you as much (or more) than they protect you. It’s taken me a while to accept that I need an “exemption” because I realise the difference that they make.

Not before the new date of 19th July, England is set to be free of social distancing and enforced mask wearing. Sajid Javid has been very keen to make mask wearing a personal choice. But my personal choice is to keep acting in the safest way I can.

When it’s cool enough (I’m in the North, shouldn’t be too long) that’ll mean I go back to wearing a mask. It’s a fact that vaccines aren’t 100% effective, especially in immunocompromised populations, and the more people catch the virus the more chances there are of mutations, so it’s still important to be safe. 

I also know some people will judge up until the point when they are no longer required – some will question “why now?”, some don’t believe in “exemptions” altogether, and (worst of all) the deniers also wearing the sunflower will probably think I’m one of them.

And maybe those of us with invisible illnesses will get back the symbol of the sunflower from the conspiracy lot, which is about the only upside I can see to removing mandatory mask wearing, but that’s just me.

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