I have a hidden disability and have become increasingly upset and frustrated at peoples attitude towards this.
I suffer from hemiplegic migraine, which at their worst can paralyse me down my left side, make me projectile vomit and make my words come out slurred or garbled, this can last from one to three days, with side effects for several weeks. Oh and the pain, the pain which cleaves through my head like an axe or a mallet, or an axe and a mallet, the distorted vision, the loose bowels, the shakes, the stomach cramps and again, the pain, the pain sometimes
relieved by the unrelenting vomiting and sometimes only by banging my head on a wall to change the pain.
So no small deal, in fact quite a big deal, a life changing deal as the triggers which are worst for me are fragrance and flashing lights, everyday things which mean my life is curtailed to a massive degree.
Everyday life can no longer be taken for granted, instead each day is like traversing hostile unknown territory, can I take the bus, well only if no one comes on with a trigger fragrance, for then I have to get off, and quickly or I could be left with vision so poor I am unable to reach a safe place before the real pain sets in.
Underground, at least I can change carriage, taxi – not in Glasgow where black cabs are sprayed with a noxious substance allegedly to freshen the air, and Uber drivers can get annoyed when asked to remove their little tree, although many are kind and understanding.
Public spaces, shops, toilets, all are increasingly fragranced, Benetton may have united colours but it pumps a toxic mix through its air con system and I am paralysed and retreat realising that I have another favourite place stolen by smell, Zara, Primark why must you have flashing screens leaving me nauseous whilst trying to purchase your goods?
Work – well that couldn’t really go on, at least not in the way it had, I valued houses and as the use of fragranced candles and the dreaded plug ins has increased so has the rate of me leaving a property only to vomit minutes later.
So, all of this is bad enough, but what is so much worse is seeing the look on faces as I try to explain the problem and then the irritation as, seemingly reasonable people just see it as a bother, an inconvenience, or me as a drama queen rather than someone who just doesn’t want to be seen in a degraded and vulnerable state.
People veer from feigned tolerance coupled with the ‘oh and how many windows would you need to have opened if someone came in with a fragrance you don’t like’, to telling me to leave as its just too much bother to accommodate me.
Really people – you would not expect a wheelchair user to push themselves up and down stairs, so why when I explain what is wrong with me am I usually met with disdain, or sighs re the inconvenience or just bloody minded rudeness, because trust me, no matter how
annoyed/irritated/inconvenienced you may feel, actually living with this every minute of every day is a million times worse.