RAiISE Your Voice – Sophie

RAiISE Your Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with invisible illnesses and conditions. In this post we hear from Sophie, an A Level student who tells us what she wishes she could tell her teachers about her chronic illness.

I’m a year 12 student who is studying history, biology and chemistry at sixth form, and I have an as yet undiagnosed chronic illness. My main symptoms are chronic pain, fatigue, and subluxations. I’ve been very lucky that my sixth form has been excellent with my illness and I’m so grateful for this. Even still, I sometimes feel like my teachers don’t really know the ins-and-outs of my chronic illness and how it truly affects me, which has inspired this post.

1 – Every day is different

Maybe I ran around a lab for two hours on Monday and today I can barely stand. Maybe I did 5 hours work yesterday and only managed an hour today. My good days don’t invalidate my bad days, it’s just the nature of a fluctuating illness. My symptoms are completely different every single day, based on a whole range of factors – the weather, hormones, what I did yesterday, food I ate, the placement of the stars… I don’t have much control over this, and I guarantee it is more frustrating to me than it ever could be to you!

2 – It really affects my mental health

In many ways, I am grieving all the things I have to miss out on and the parts of my life that I am slowly losing. I have watched my body decline over time and felt things I found easy become difficult, like hiking and washing my hair. It is so difficult to feel out of step with your peers and see them do things you can’t – it feels like being left behind. Accepting my chronic illness is a constant process which has required a lot of hard work, and I am still learning to love myself on the days I don’t achieve anything tangible.

3 – Sometimes I make bad decisions deliberately

I manage my symptoms with pacing. This mainly involves spreading out high energy activities across the day/week, resting frequently and taking regular breaks. Learning about pacing has hugely improved my quality of life day-to-day and reduced how many flares I have – it has allowed me to do more. However, there comes a point where I get fed up with trying to fit my life around 30 minute timers and scheduled resting. So sometimes I run up hills just to feel alive or go to concerts on a weekday when I really want to. I know I’ll pay for it the next day, and I choose to be okay with that in order to feel spontaneous and live my life. This doesn’t make me a bad student, it just makes me human.

4 – It makes me feel inadequate in comparison to my healthy peers

It doesn’t matter what my grades say, my brain can always find ways that I’m inadequate. Whether that’s the amount of time spent working, lack of revision/extra reading, inability to have a part time job, or something else entirely. Sometimes it feels like I am running to keep up and that is exhausting. Society constantly tells us that our productivity defines our worth, and chronic illness makes me feel inadequate because of this.

5 – Even when you tell me not to worry about missing a deadline, I still feel guilty

This happens every time without fail. It doesn’t have to be big major deadlines, sometimes I do exam questions late and still feel the guilt. While logically, I know I am allowed these extensions to level the playing field with my healthy peers, I feel as if I do not deserve them or I am not trying hard enough in the first place. I don’t ask for extensions as often as I should because I want to “make sure” I definitely need it, but this just means I work far too hard for no reason.

6 – Your awkward questions probably aren’t that awkward, please ask me

I honestly wish people would ask more questions! I often feel like my teachers don’t quite know how to deal with my illness, and instead sidestep around it, but I’m more than happy to talk about my illness and experiences. I guarantee that I won’t be the last chronically ill student you teach, so it’s important that you understand our experiences as much as possible. You may think your questions are really awkward, or too personal, but I guarantee I’ve had weirder. If it is actually that bad, I’ll just tell you, and then you know that for the future.

7 – Your little gestures are truly appreciated

While I’ve had bad experiences with teachers before, those aren’t the stories I tell. I always talk about all the good things people have done for me, the kind words and little gestures. I’m pretty sure half the people involved in these stories don’t actually remember it. One teacher told me that she wouldn’t be disappointed no matter my mock result, because she knew my circumstances were bad at the time and I could do better in the real thing, and it honestly meant the world that someone believed in me that much. A youth worker sat on the floor with me at a conference when I was too exhausted to go to the workshop, and talked to me (even if I was hardly making sense) – it’s always stuck with me that I didn’t have to spend that time alone. Kind words and little gestures really do go a long way.

Having understanding teachers has made the world of difference for me throughout my time in sixth form. It has been so invaluable to be believed without hesitation, to have help offered to me so often and to know someone has my back. Much as it’s cliché, a little bit of empathy truly does go a long way.

Sophie is a blogger who writes more about her experience with invisible illness and education. You can find more of her work at https://sophiemattholie.wordpress.com/

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