The good times are very precious and even though I know I shouldn’t get too attached to them, I still have that optimistic side that never stops believing that one day, it will be like in the healthy days again.
When sickness hits me, I want to run. But I’m too weak to even think. It feels like melting away. Some force is tearing me towards the floor and breathing becomes harder and harder. Blurred vision, pain in my legs, wishing it would just end. Nothing can stop this process and as I get weaker, I try to go through my emergency plan.
You don’t see my struggle when I’m standing next to you, while you take the last free seat on the bus. You don’t think that I can get sick just by standing next to you. You don’t see me struggling to ask you, if I can take your seat. You don’t see how much effort it cost me to even get here. You don’t see that I have to be my own hero day by day.
When you judge me for using a wheelchair, I want you to remind yourself that just if someone doesn’t look sick, it doesn’t mean they aren’t sick. You don’t see how much time I spend everyday putting on make up to cover that I’m pale and feeling terrible. You even tell me how great I look although the only thing I did was putting on an extra layer of make up because my day started off pretty rough and I almost fainted while taking a shower. You don’t like it when I’m sick. I don’t like it either. You don’t like to talk about my bad days because let’s be honest, there are just too many bad days and it probably reminds you of all the things that go wrong in your life. But just so you know, I will never stop talking about what bothers me and more importantly I will never stop fighting for my rights!
It’s cool that you want to help me get on a bus. But the driver will not know when I want to get off the bus then, because normally she/he’s the one that helps me in and then I tell her/him where I want to get off. When you’re standing next to me the driver will assume that you will help me get on the bus and off. People have been pushing the buttons for wheelchair users on public transport for fun and now the drivers double check if they really need to get up. This might result in me being trapped and not being able to get off the bus.
Please go ahead and ask me questions! Don’t just assume anything. Yes, I’m able to walk some days! Yes, ambulatory wheelchair users exist! Yes, I can move my legs and still need a wheelchair. Yes, it’s possible that one day I’ll be better but my disease is chronic and there is no cure. You don’t help me by saying everything will be ok again. Recently more and more kids came up to my wheelchair and wanted to push me or asked why I needed this or that. I don’t mind answering questions. Let your kids ask questions. Don’t apologize for their beautiful curiosity. Stop being so afraid you could do something wrong.
Imagine if it were you sitting here. How would you feel when everyone would be staring at you even though you just wanted to get on the bus?
This week is POTS awareness week. So start opening your eyes and help break down barriers.
For further info about POTS visit: