EnableMe | enableme - stroke recovery and support

Over the last few months at the school where I teach casually, there has been a big focus on mental health for the students. I’ve sat through many assemblies where mental health organisations have presented to the students. The recurrent theme seems to be breaking down the stigma of mental illness and saying it’s okay to talk about it and get help. You shouldn’t worry that people will treat you differently or think you’re dumb. Yesterday was no exception. Another group came into the school to talk to the students about things they can do if they are having problems and things they can do if they see their friends having problems. Their big message was around breaking down that stigma of invisible mental illness.

It got me thinking about all invisible illnesses. Mental illness is a huge one and it’s gaining traction in the media and people are sitting up and paying attention. Workplaces are focusing on staff wellbeing and mental health, recognising that happy and healthy staff are essential for happy, healthy and successful workplaces. The world needs this in their workplaces. But what about other invisible illnesses? How are we helping them?

So many young people who have strokes aren’t able to return to the workplace. And those that do sometimes put themselves under enormous pressure to make it seem like they’re okay. That they can cope with the workload. Outside they look well. People say “You look really well!”. They can’t see any signs of illness. They don’t see the invisible internal struggle each and every moment: to be like everyone else, to find the right words, to focus on ensuring their arm or leg is doing the task their brain wants it to do, to fight the fatigue. But inside they might be screaming. “Notice that I need a break!”. “Can’t you see this task is taking a lot of my energy?”. “Don’t you know I’m here an hour before everyone else and I’m here long after most people go? Don’t you see me taking work home at night, on weekends and holidays?”. People afraid to say “no”, worrying that people won’t see someone who needs a bit of support to complete their work, that what they will see is incompetence. People afraid of what the loss of income will do to their families.

For three years that was me.

“Come back full time, or don’t come back at all.”

No choice.

“You do know your own name, don’t you?”

Feeling like an idiot.

“You’re not the teacher you once were.”

Give me a chance to learn to be that teacher again…

“Maybe you shouldn’t be working anymore if you’re not up to it.”

Maybe I shouldn’t.

Why is there such an assumption that because you’ve had a brain injury you’re no longer capable of work?

Why is it that profitability and productivity are more important that people?

When did the person become less important?

Surely people are the most important part of any workplace.

The stigma attached to brain injuries need to be smashed.

I’m one of the lucky ones in one respect. My husband and family supported my decision to leave my job. We scrape by on my husband’s income and whatever money I can bring in working casually. How many people end up on unemployment benefits because they’ve been declared unfit for work? Feeling worthless because they can't find a place in society? Why can’t we employ them in roles that are suited to their abilities?

The TV series “Employable Me” highlighted some issues for people with some disabilities. But I ask myself why, as a society, are we not nurturing people, finding a niche they can fit into? Don’t our lives have meaning? Are we always to have that label?

Our disability doesn’t define us.

I’m afraid to tell people about my stroke. I’m frightened that they will treat me differently. Or use it as an excuse to not employ me. I’m afraid of being labelled. I’m afraid of a label being used to define me.

People ask me all the time, why I decided to train as a teacher librarian when I was a good teacher? I have crafted my response so that there is an element of “illness”, and wanting to focus more on my family, and focusing in on an area of teaching that I value and that I think is essential. Up-skilling myself.

Never that I have a brain injury that will never heal.

Never that the ongoing fatigue of managing classes, keeping up with professional development, preparing, marking, assessing, reporting, was slowly wearing me away.

Never that I just couldn’t take another day of people’s indifference, inhumanity, or misunderstanding.

I long for the day that I’m not afraid to say “I had stroke and that’s why I need a job that’s less stressful for me”, when asked why I left teaching.

I long for the day that people are not afraid to tell their employers about their invisible illness, and for the employers to say “Thank you for telling me. What can we do to support you so you can keep working here?”.

Time to start our own campaign to remove the stigma of invisible illness.

Humans are a weird lot wanting to put poepel into boxes that fit the narratives they have created and thus make sense to them. I have had so many discussions re the 'you don;t look like you've had a stroke' and tehn the look to my husband as if he is going to confirm their suspicioins that I am makeing it up. At times I respond with understanding of their confusion whilst others I may be more blunt and make some sarcastic remark re my damamged brain and teh part taht's dead (luckily that's only been a couple of times :) )
One of the greatest compliments i got was from a teacher who I had worked with who, on hearing I was astrokesafe ambassador, responded with "See Toni, you're still a teacher just in a different environmentr," and for me this was perfect. I knwo I can;t work in a classroom, even tutoring on a regular basis would be beyond me, but in this role I am combining my two loves of teaching and volunterring in a way that feels important.
An invisble illness it may be but gee I'm going to make people listen to me!

I agree with your colleague: you are still a teacher! I remember when I was first hospitalised, every doctor in the hospital wanted to see me and for their students to see me. My response was always "yes" because I knew the value of exposing medical students to a variety of "strokes". In the end my Mum and my husband had to step in and ask them to not do it so much because I wasn't resting enough. I can't tell you how many times I had to raise both arms, try to read something, try to write etc. I kept thinking "but they have to learn about young people who've had strokes! And the rest of the people in here are all old people!". My spoken vocabulary at that point consisted of "yes" and "no".

So glad you've found a niche Toni!!

WOW - You go girl! Coming forth to say exactly what inconsiderate responses you have needed to navigate.

I read your blog with my heart racing, yes, say it, yes get it out and show just how insensitive people can be. And there we are struggling with ways to respond to such insensitive people in a way which does not further someones perception of how someone who has had a stroke may be.

Does anyone ever receive a reply of simply "I'm sorry, that sounds like it must be really hard at times for you." Where is compassion?

And the invisible illness that is visible if only others took the consideration to respect what we present with.

An awesome start to my morning reading your blog Kat!

I'm with you all the way :-)

Sue xxoo

Yes i can relate to that . Had my stroke september last year and went back to work as a courier just monday and friday once fortnight but i ask myself why? Just clearling 220 p/f !! Is this worth the very busy run i am on, traffic being on road as medical courier 7hours a day? Still experiencing numbness and stiffness!! Is that all i can have down the road? Starting to get me down! Doe anyone else feel like i do? I guess luckier than most but no-one understands how i feel inside!,

That would be a tough job, especially with the traffic. I deliberately go early or wait until the peak is over to drive when possible. Lots of traffic scares me driving. I guess you don't have that luxury as a medical courier. Lucky we have the community here that can sympathise with us and the way we feel.