Spreading Awareness & Helping Others with EDS & POTS
This is another piece I’ve just had published on the Mighty which I wanted to share with you.
After working in the retail sector for as long as I have, I’ve learned that customers are inquisitive and tend to point out when something is different. In my four years of working at my local cinema, I have been asked a plethora of questions about the cinema: “Can I take my drink in with me?,” “I’ve only got cash – is that alright?,” “You’re Screen 3, Row H, Seats 10 and 11?… “So can we just sit anywhere?” (*facepalm*). Other times I get asked slightly more intrusive questions: “Why do you spell your name like that?,” “Do you have a boyfriend?,” “Did you intentionally dye your hair to match your shirt?” (my dip-dye pink perfectly matched the stripes down my sleeve – not intentional). Eventually you learn how to answer these questions and let them brush over you. However, when I returned to work between surgeries I did not have such a great experience with customer questions.
The first day I went back, I tried (way too soon) to work as if nothing had happened, but after just short of an hour on my feet I couldn’t hide the tears from the pain in my back any longer and I had to sit down. So my subsequent shifts I was allowed to sit and take guests tickets, using my stick to get up to use the scanner for e-tickets. Many of my colleagues saw me struggling with my stick and asked why I’d even bothered to come back to work between surgeries (the answer: because I need the money, but that’s a separate issue entirely). Customers, however, were not so kind.
Although most comments were innocent, one comment still sticks out in my mind. I said my usual “Hi guys” as I waited to be passed the tickets, but without any pleasantries this customer said, “Why do you get to sit on a chair and he doesn’t?” I felt this was a little rude and direct and, although I shouldn’t have to divulge the fairly personal health reasons as to why I was sitting down and my colleague on the other side of the building was standing up, I simply said, “I had spinal surgery a few weeks ago” – an honest answer but definitely not the full story. When I had revealed this small part of my journey to other inquisitive customers, they would reply with an apologetic “good luck with that,” but instead, this customer said, “Don’t give me all that.” This upset me, but not wanting to let it show I took their tickets and sent them on their way.
I didn’t want to stay quiet. I wanted to tell him I was a 21-year-old chronically ill woman who has been in constant and often extreme pain for the last two years, who was unable to stay at her university due to debilitating symptoms, who needs daily medication to manage these symptoms and who has already had three surgeries in the last four months (the most recent being two and six weeks earlier) and was awaiting a final one but needed to work in order to make enough to get by. Sitting on a chair does not stop me from doing the same job which enables you to see your film; in fact, it enables me to do a job I wouldn’t be able to do without sitting.
The amount of people who simply felt the need to point out I was sitting down was astonishing to me, especially since my walking stick was clearly visible. With most of the comments I used my usual trick of laughing along with the customer and brushing it off. Many innocently remarked that it must be nice to be able to sit down. And yes, it has been nice in the sense that it has allowed me to continue working despite my surgeries, but the fact I am in pain and unable to stand and walk unaided is not so nice. If I had needed my wheelchair rather than just my stick, I wonder how many people would have said, ‘Oh it must be so nice to be able to sit down’. But no one asked me why I needed a walking stick, so…
Dear Customer,
If anyone is sitting down at work where you would normally see someone standing, there is probably a reason for it. An important reason that meant an employer had to make reasonable adjustments for that employee to do their job. The reason is none of your business. If someone is genuinely interested, I am quite happy to advocate for my conditions. I take great pride in spreading awareness.
But please do not ask and then be rude about the answer. You asked me not to “give you all that” – I barely gave you one percent of my journey. I told you about my surgery and you still gave me grief. I wish I could stand up without being in increasing pain. I wish I could do my job without having to answer such questions and having my weakness pointed out to me over and over again. All I’m doing is trying my best to pay my way in this world. Surely you can understand that.
I’m 21 – I should be graduating with my friends, going out to parties, being “young,” but I can’t because I’m sick and I will always be sick. So the next time you see someone or something that is different, please don’t point it out. There is a reason for it and you don’t know how much pain your words can cause. Next time, please think before you speak because someone may be fighting a battle you know nothing about. Be kind, always.
Many thanks,
The chronically ill young woman sitting down at work.
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