Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

'Will it be easy ..? Nope. Worth it ..? Absolutely.'


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I get asked a lot, 'what made me start a blog ..?', 'Is all you're wanting attention ..?', 'What do you hope to achieve ..?'.

The reason why I started my blog was because I realised how little knowledge people have of Erythromelalgia and Raynauds, but also what people go through every day having these, and any other chronic illness. It's to raise awareness, so that people don't mistake signs of a chronic illness for just simply depression or laziness. No, its not for attention, or to promote myself, it's to promote everyone who goes through any sort of illness that they have for life with no cure in the foreseeable future, no matter what age. I'm hoping to achieve a lot by these blogs of mine, yes, I know that they may never be well known, or reach everyone who has a chronic illness, but every little helps, so even if it helps just one person, I'll have done my job.

I know that when I was first diagnosed me and my parents had no idea what would be instore for me, or what it all entailed, and I wished that I had known someone who also had it, as it always helps knowing someone who knows what you're going through, knows your pain, and maybe even how to alliviate some pain. However, we knew no one, and as much as my parents tried to help, I still couldn't help but feel alone, as I'm sure many do. When you reach that feeling, it brings on depression, which is a steep dark road to nowhere and very, very hard to get out of. Luckily, i was fortunate to find a group on Facebook who helped with Raynauds and another for Erythromelalgia. They provided support and knowledge on all the things that came with both disease that I never knew existed. This, this is why I created my blog, so that I can provide that support to people who need help, who need that little push to see that what they have doesn't define them, to help think positive thoughts. I know, it gets you down, with the thought process it supplies you with, thinking that your life will never be the same again, and no, no it won't ever be the same, but you can't let that be who you are, rise above it, show people that you are so much more then your ideas, or mental/physical illness.

I get it, the worst part of having a chronic illness isn't the symptoms. It's not even the horrible side effects from the prescriptions, it's the looming judgment from those who do not understand, or don't are enough about me to research and try better understand what I'm going through.

We have all been there, having to explain why we did what we did because of what we've got, I've had to do it so many times, 'Well why did you leave your job ..?, you wasn't there very long!', my reply, 'I physically just couldn't do it, after being diagnosed with EM, it took a toll on me, and standing for 8 hours a day did not suit my needs.' This was my reply at the very start, now ..? Now its just 'I just physically couldn't do it', in which the reply I get, 'Well we all don't want to do stuff, but we do it anyway', or 'Well thats lazy'. Recently someone asked me this, I used my second reply, and they looked at me strangely, until my mum told me to fully explain myself, little does everyone know, but I'm sick of having to explain myself, because if I don't they paint a picture of a millennial kid who's lazy and fitting her social norms. Hate it, I really do.

I went to an interview recently, and the interviewee worked for a clerical agency, I had to explain to her why I chose the clerical side of work because of what I have. She then stated 'Don't ever tell your future employees what is wrong with you, as they won't want to employ you, you will appear sick and unfit for work, so keep that a secret'. Well ok then, I'll just have to tell my employers that I need a day of for no reason when I really have a Hospital appointment ... Madness. We shouldn't have to feel ashamed of what we have, we need the support, we need the extra care at work.

This is why I have recently sent in paperwork to volunteer in a Hospital (Clerical work), and starting in the New Year. I easily told them about my diseases, and they was so understanding, saying that because I am doing them a favour by volunteering they will make sure that all my needs are seen to,

I hope that everyone finds the job that suits them, that they don't have to put up with people who don't understand (Although I know that we all will at some point in our lives) But if you do, don't let them get to you, you are you, you are unique. All you have to do is think - 'You are not obligated to do everything a healthy person does. You are not obligated to hide your illness in order to make other people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can't get up and do anything but go to the bathroom. It is not your fault if other people leave you because of your illness. It is not your fault that you are sick. You don't have to apologise for something that is out of your control.' - Your illness doesn't not define you, your strength and courage does.

Until tomorrow,

Bethany S.

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