Both photos are taken on the same day- I would have 100% been unable to enjoy myself as much as I did without the use of the mobility aid & my friends as carers, I’m going to do a blog post about this very soon!
Having a chronic illness at such a young age definitely causes a lot of confusion- particularly to uneducated members of the public.
I have complied a list of funny comments I’ve received in response to my tics, my need to rest & any obvious symptoms.
My friends and family:
It makes me quite emotional thinking about the immense love I have for these people.
The insults they take from me, the cleaning up of my poop & sick, the fun and emotional support they offer is overwhelming.
Insults. I told my friend she had big teeth when she asked me if she had anything in her teeth- she is very self conscious of her teeth as it is and I was mortified with what my Tourettes came out with. She in fact does not have big teeth and was able to laugh it off.
I’m constantly reminding my 5’0 foot mother just how small she is ‘tiny little lady’ ‘so cute and tiny’ ‘what’s it like down there being so small’ ‘shh you are small’ in fact anyone smaller than me (5’6) tends to get the brunt of my Tourettes. This is usually a humorous tic although draining when surrounded by small people!- A younger family member definitely got the brunt of this when I constantly ticced tickling his chin saying I like small people. This went on for 3 days. Sorry. WEIRD.
If I am out in public on a ticcy day I definitely find myself in some odd situations!!
My tics tend to have a daily suspect which is rather amusing- for example when at a large family party (extremely stressful with Tourettes despite how supportive my family are- will save for another post) I chose to constantly refer to someone as the ginger one ‘does he know he’s gone ginger’ ‘shh you can’t talk ginger’ ‘XYZ is ginger’ when in fact – he is the blondest person you will have ever met & I have no problem with gingers. People have learnt to take everything I say with a pinch or three of salt.
Sometimes my tics like to perceive me as obnoxious’ I’m the only talker here’ ‘I’m the cleverest ever’ ‘Shh I have the best brain’ ‘you’re boring’ I often mimic what people say in a ‘taking the piss’ kind of voice. If people become offended it’s usually because they don’t know me & how much of a nervous, people pleaser I am!
Having a blue badge:
Having a blue badge has 10000% made a dramatic improvement to my quality of life. I am amazed at how much energy I can save by parking that little bit closer (although I usually only take advantage of the badge when driving alone- (I’ll save that for another post!) Words can’t express how grateful I am for it- it makes me able to do tomorrow as well as today and get a lot more done each day.
I’m becoming used to the stares from both disabled badge users themselves and able bodied people. The stares of ‘whose badge has she stolen?’ Or ‘should she be parking there?’ ‘she’s not in a wheelchair?’ The stares from these people don’t need to have any words to accompany them as i know exactly what they’re thinking. Gaining a blue badge is a really difficult process and you have to be very worthy and frankly pretty sick to be approved. I assure you it is my badge and I do need to be using it.
I often feel a rush of guilt as if I need to be acting a certain way getting out my car as a person with a disabled parking badge. But my badge is mine for a reason. I’ve had many traffic wardens check my badge & many an argument explaining they should educate themselves on invisible disabilities.
Please bear in mind this is just one example- The people mimicking my tics or giggling is an everyday thing. Ofcourse I understand as Brits it’s within our ‘culture’ to stare at things which seem a little ‘weird’ or unusual but the responses to my tics make me laugh. I’d say there are 3 types of people with my tics.
– The ignorer: These people make me laugh, they pretend I didn’t just say something really weird out loud or make a funny noise or claim they didn’t notice- it’s very sweet but it’s also a big lie hahah!
– The questioner: I like these people they want to know more about my tics although please
– The laugher: The purest of them all- positively these people don’t think before they speak and simply respond to my tics in a natural human being response.
Laughing is always allowed but showing some empathy that it does my head in and your 2 hours spent with me is only 2 hours out of a 24 hour day 7 days a week. Talking about the tics make it worse. The only way to stop the tics is acknowledge the tics once & then don’t talk about the tics.
Whilst on the London Underground (a task I dread doing- the amount of fatigue it causes to my body is ridiculous) I was having a particularly bad ‘Tourettes attack’ most likely due to the fact it was so busy and that I was so exhausted,
I had a offensive yet humorous encounter with a middle age lady and her two children. I always wear my priority seating badge when on public transport as I find it embarrassing to ask for a seat- when in reality I really fricking need it!! (Saving my thoughts on this for another post) Anyway! There I was ticcing away inappropriate, strange but harmless tics- mainly about random animals, eggs and tiny people?!- never swearing (only 10% of people with TS swear contrary to what is portrayed in the media!) and a lady on the heavily packed tube grabbed both her two children by the hands stared at me and moved quickly to the next carriage. If I was in a bad mindset that day I would’ve been upset- but instead my Tourettes made the situation humorous for everyone else & I decided she was the one with the problem and if she felt the need to run away from me with her children she should pray that TS doesn’t come out the blue for one of her children as it did for me & as I am actually a fully DBS checked babysitter and a very good one at that- she should be less ignorant.
Some of my views may come across a little bitter- in fact yes I am, surely you would be too. I spend 80% of my time being as positive as possible so for that I feel no problem with the 20% of miss Pessimistic Perry. I’ve learnt to accept my new way of life so hopefully other people can too:)