Meningitis Now staff member Andy Hopkinson

Living in the Grey - raising awareness of unseen disabilities after meningitis

Andy Hopkinson | 1st September 2019

Our supporter Myrian Panayi, who is fighting back from viral meningitis, has launched a campaign to raise awareness of unseen and invisible disabilities. She explains why here, and how you can support her

Meningitis Now supporter Myrian raising awareness of hidden disabilities while fighting viral meningitis

*Photo courtesy of The Express

“Living in the Grey, let’s show the world our true colours."

“Living in the Grey: life is not black or white, nor are you… (let our true colours shine through)."

“I'm raising money for several charities that have helped me over recent years and continue to support me with the ultimate goal of my campaign: to raise awareness of unseen / invisible disabilities nationwide and to work towards having a universally recognised symbol that those with unseen / invisible disabilities can choose to wear so that they may also be understood in public."

Managing with unseen disabilities

“As someone with unseen disabilities, I face a daily challenge of managing not just at home but out in the world. I am aware that life with unseen disabilities isn't black and / or white, people can’t see your disability much of the time, yet you suffer with it and it affects all areas of your life. Life with unseen disabilities is about compromise and living in the grey in so many ways. (This is equally true for those facing illness that doesn’t leave them with a chronic disability but does mean they need extra support during times of need)."

“You aren't just your disability (you aren’t fully abled nor fully disabled as such), you are more than your disability... what is your more? For me, realising this more has been vital for my recovery and making it through another flare or hospital stay, helping me stay focused, feel useful and giving me a purpose and identity outside of my illness."

“My aim is to raise awareness of unseen / invisible disabilities. Baby steps to start, with the hope it goes national over time, and to work towards having a universally recognised symbol that those with unseen/invisible disabilities can choose to wear so that they may also be understood in public and not have to explain themselves."

Stop dying my hair – yikes!

“How, you may very well ask, will I raise awareness? Well, it's a big task and rather than get stuck on the impossibility of trying to achieve the ultimate goal on my own, which is too big a task for any one person, let alone one limited by an acquired brain injury and active Crohn's, I've decided that perhaps starting a social media campaign may just be the water and sunshine needed to start the roots growing."

“I'm doing this by going back to my roots. I have decided to stop dying my hair and let my very grey hair grow out... yikes. I’ll be charting my progress along the way on social media (yikes again) until my hair is completely its natural colour – grey (and lots of pepper too!), which I’ve been told can take up to 12 months."

“And thus… (‘Living in the Grey’ should now hopefully make sense) making the invisible (grey hair usually covered by dye), visible – a metaphor for, well, unseen disabilities and hopefully raising awareness and money along the way for the charities that have helped me and continue to help me."

Raise awareness and gain momentum

“The aim here is to raise awareness of all unseen disabilities, acute and chronic. To get a discourse started and for it to gain momentum so that all charities and movements of all unseen / visible disabilities unite somehow to start educating the public and employers about invisible disabilities."

“To work towards having a universally recognised symbol that those with unseen / invisible disabilities can choose to wear so that they may also be understood in public."

“To be offered support if needed and not to have to explain themselves. Not to suffer, go without or be judged."

“I've not set up a monetary target (though somehow the JustGiving page sets one up on its own!). This is going to be an ongoing event and any donations will really help these great charities continue to do the excellent work they do AND people's interest will keep me going during the tough part of growing out my grey when I will want to run and hide (or dye my hair)… the hairdresser said it will take around 12 months... yikes and yikes and yikes."

Lonely business

“Living with a chronic illness and disability is a lonely business, so social media sharing will be my ‘friend’, the person I am accountable to (being someone who keeps her word, I seem better at staying on task when I state to another something I am doing or going to do)."

Join the Living in the Grey challenge

“Hopefully, just maybe, individuals will want to join up with me to do their own raising awareness of Living in the Grey. Perhaps by growing out their hair to its natural colour, or maybe unveiling to the world something that they hide away such as a talent or skill and at the same time raise money and / or awareness for their chosen charities that support those with unseen disabilities."

“And maybe, just maybe, enough people will create a national campaign all out of one action. Maybe united we will be heard and a difference will be made… and then maybe, just maybe, some of these people will want to join up with me to form a team that can take this whole campaign further – (please DM if you are seriously interested)."

Follow on social media 

“And if none of the above appeals, perhaps you wouldn’t mind following me on social media (Facebook, Twitter, Instagram), helping me spread the word by reposting the relevant Tweets and sharing the JustGiving pages. Anything positive to get the campaign heard in the right circles (maybe you can put me in touch with people who may be interested or relevant to the cause, or people who might be able to give advice on next steps or mentor me on the campaign and social media platforms. Any little thing would be one giant step towards helping to spread the word – possibly beyond what we could ever imagine."

“So here I am, taking one little step, come walk alongside me..."

“Our voices are louder together let's shout!"

“I'll post regular photos and updates of my journey on social media (Facebook: Living in the Grey, raising awareness of unseen / invisible disabilities; Twitter: Myrian, Living in the Grey @Millionflowers1; Instagram: Myrian, Living in the Grey @MillionflowersUK; Medium:

"You are not just your disability... you are more. What is your more?”

Read Myrian’s meningitis story.

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