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What I Need to Remember When I Don't Share Details of My Illness Out of Fear of Judgment

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As some of you will know, I’ve recently started my new job at a truly lovely school. The staff are incredibly lovely and supportive, and the atmosphere seems genuinely fantastic. Honestly – I’m not just saying that in case they happen to stumble upon this and think I hate them or something.

Firstly, I want to let you know I am very, very tired. Due to my illnesses, working full-time is taking a lot out of me (and it’s only week one). I am doing my best to keep up, but I’m finding it difficult to stay conscious or have the energy to do much at all at the moment.

Secondly, and most importantly, this post is specifically about discrimination.

I’ve experienced it before – all on minor levels – mainly due to the lack of understanding and empathy that inevitably comes with having an invisible illness or disability.

But the other day, I saw my first true glimpse about what life was like on the other side.

Let me be clear: the “infraction” (for want of a better word) against me was minor, and a perfectly reasonable solution was offered. My grievance is not against that, in any way.

My school, as a whole (and its staff), are genuinely working towards making sure I’m in a comfortable and safe environment.

However, one of my illnesses causes my body to become paralyzed (it’s more commonly referred to as cataplexy) when I’m very tired or overstressed. Granted, it can occur at any point in time, but exhaustion and stress are major triggers for me.

As a result, I do not like to drive at night time – due to obvious safety reasons.

Anyway, in a few weeks, I will be undertaking professional development that won’t finish until night time. It will occur after a full school day, so my chances of being completely and totally destroyed are extreme.

I’d previously mentioned to my employers about my inability to drive at night time. My pride – and prejudice, if you will, from my past experiences – stopped me from going into too much detail.

After all, I did not want to be the “sick” girl again. I didn’t want the stigma, shame and judgment to follow me again.

When I asked if I could possibly leave early, the response was a clear and resounding no. Leaving early, in itself, can have a major impact on my health and whether or not I’m able to cope with work the next day. (Seriously. I can get that sick that quickly. A bad night’s sleep alone can mean vomiting and the inability to move or function like a normal human being.)

The solution I was given? Find someone to car pool with (as my husband works away, so he’s unlikely to be there).

It’s a fair solution. More than fair, really. Certainly reasonable.

However, it does not take into consideration why I can’t drive at night.

My pride – and fear – stopped me from elaborating the consequences of such a long and exhaustive day. I want to be judged for who I am and not for my illnesses.

However, I realized that, on this day, someone hadn’t questioned why – they’d just jumped straight to a solution.

My problem, again, is not with the solution.

Until I became a person with an invisible illness, I was not aware of how difficult day-to-day activities and tasks could be. Nor was I aware of how severe anxiety and depression could become. My awareness, through my own personal experiences, has grown and will continue to grow.

While my school has worked so hard to accommodate me on certain parts of my illness – including providing me with special rooms and ensuring someone else is almost always nearby (just in case) — it’s easy to forget that coming to work can be a struggle for someone like me. For others like me.

It’s also so very important to understand and remember that it’s easy to become dismissive of someone when they have an illness or disability you can’t see. While this is understandable, we need to work towards creating a better, safer community. A place where those who have physical or mental illnesses or disabilities are heard instead of judged and shamed.

Empathy and understanding can go a long way.

And while I don’t want to be judged for my illnesses, I also need to learn that my pride can destroy the effectiveness that others would so kindly bestow on me otherwise, if they knew the truth.

My lesson is that just because some people have treated me with judgment and cruelty, doesn’t mean everyone is prejudiced against those with an invisible illness.

If I want to be heard, if I want to be seen, I need to make sure I trust people to be decent human beings, too.

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Image by alexandra_comaniciu

Originally published: October 19, 2016
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