What’s in ME purse? Guest blog by Ev Kendall | 11 November 2019

Ev Kendall writes an award-winning blog: The Cornerstone for Thoughts.

What do you keep in your purse? Debit, credit card and loyalty point collecting cards, but do you keep an alert card in your wallet? Well, you probably don’t unless you live with a condition unrecognisable or invisible.

This month, the ME Association issued every magazine subscriber with a redesigned alert card which could be used as a safety net should the worse ever happen whilst out in public without those who understand the condition.

To those who are living under a rock, alert cards are shaped like your standard debit card to fit in without looking different to any other card in your wallet. On the card it gives a brief description of the illness with contact details for your next of kin and your GP.

I’ll admit my GP wouldn’t be much help if the emergency happened at 11am when the reception refuse to deal with a request until 3pm… and my GP does not understand M.E. as an illness let alone one that is life- long.

But, these are definitely cards for emergency situations; you can’t slip this under your nectar card when filling the car up with petrol, however I want to shed some light on an experience I endured whilst in the early days of diagnosis and how a card like this one who would’ve been ideal.

Commute and Collapse

In January 2018, I got on my standard commuting train. A train that from the departing station till the midpoint stop was heaving with commuters with no seats left when I got on it. 2 weeks prior I had still been signed off with chronic fatigue.

I got on the train having had a mentally traumatic day that has still left its marks on me to this date; so, stress mixed with neuropathy, fatigue and brain fog I hopped onto the train.

Within the initial seconds of the train departing, I felt peculiar. My legs felt like jelly losing the little sensation they’d got, and I couldn’t feel my feet either. My brain was in a confused, delirious state.

I stood pushed up against the sliding doors of the train and the next thing I recall I’m on the floor of the carriage being asked if I’m OK by two fellow commuters who couldn’t work out whether I was high, having a panic attack or just delirious.

I don’t remember much from the journey other than finding myself in the bath hours later feeling humiliated, scared and damaged from the day’s events. It’s one of those days that I try to dislodge from my brain and hope it’ll never resurface but is one of those occasions that turns up during the insomniac nights.

It was at this time, that I wish I’d had something like an alert card that I could’ve been able to give to the people around me, even in a delirious state to be able to communicate my condition in a written manner so they might’ve understood what was going on and who to contact for help.

Conditions like M.E. will forever face criticism and be questioned for their validity but coming from someone who has experienced the full spectrum of the condition I can confirm the illness does exist in all its glory and all forms.

With alert cards such as the one the ME Association are offering to subscribers, members and via their website shop, we can be in the safe knowledge that our anxiety about public spaces, transport and the whole shebang doesn’t have to be scary because there is that piece of card in our wallets/purses communicating our issues without us even needing to speak.

Invisible Illness Campaign

The ME Association are the not the only ones who can support us. For those commuting in and around the City; Transport for London have issued their invisible illness campaign which comes in the form of a card and a badge.

The badge with its ‘please offer me a seat’ has been designed to be similar to the ‘I’m pregnant’ card which is on the presumption that commuters will see us wearing these badges and immediately vacate and offer their seats up.

I’ve experienced both ends whilst visiting the Capital. The first, is where people are more than accommodating and will get up and guide you to the chair whereas the others, look at you and question your illness based on appearances.

The ‘don’t judge a book by its cover’ hasn’t reached this end just yet. So, like anything it’s about experimenting and seeing whether these handy features we can stick in our purses or on our jackets will in fact work or just be collecting dust.

Final Thoughts

I’ve seen the benefit of wearing a badge such as the one TFL have designed but I’ve also seen the downsides. Downsides such as being asked what's wrong and I was a fraud because I was wearing a suit with heeled boots.

An irreverent argument. A fraud to me, is the person who claims to be in agony with their back but somehow manages to recreate the flash dance routine. He’s the fraud.

My invisible illness is not the fraud. But, like anything it comes with its pros and cons.

I’m not going to sit on the fence because it gets nowhere, just ask Nick Clegg he’ll prove siting on the fence does sweet FA.

I’m for the badge because it alerts everyone to the fact you have an issue whether it be M.E. or possibly another illness that is also invisible.

But, the problem we face as M.E. sufferers is this; until understanding is provided to inform those of the condition across the entire spectrum – we will continue to face dirty looks, misunderstanding and discrimination as a result of our invisible illness. We’ll still get, ‘Oh have you tried x? ‘Oh, I’m tired I must have that’ and ‘oh I’d love to spend all day in bed’ until something is in place to inform the simpletons of the illness.

The alert card – I am all for. For £1 if you’re not already a subscriber to ME Essential magazine, is £1 worth spent.

Knowing that God forbid you were in an emergency situation you’d be with people who had been/could be informed on how to proceed; without causing more injury to the situation our of blind ignorance.

I know that had I been able to whack out this card on that train, they might not have looked at me like I was a drama queen; now this is anxiety talking because rationally speaking – people around me would’ve been concerned or so we hope.

I do feel, however that until we inform, educate and teach our society about invisible illnesses such as M.E. we will be forever chasing our tails. We do make progress but until society catches on we’re never making real change and having the real impact that needs to be achieved to support all sufferers whether on the mild, moderate or severe end of the spectrum.

Until I can explain my illness without the above assumptions, I’ll continue to fight for future understanding and education about the illness and the impact it has on all our lives.

The ME Association

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