Open Letter to (some) Healthy People

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Hey so this letter was provoked by a comment someone said when I told them I have ME. 
Me&X are casually talking and I mention that I'm interested in being a disability rep...

X: I know this sounds weird but you don't look disabled though
Me: I actually have ME, it's a chronic illness where I basically have constant pain and fatigue.
X: (ha) Really? That's not a real disability though. Like, you know what I mean... you're not in a wheelchair. And I'm pretty sure I saw you out the other night! And you seem really bubbly and crazy so...
Me: Yeah... well, 90% of the time I'm resting in my flat, I guess you don't really know someone's life. It is a really complex disability but I get it, it's not written on my forehead. Actually, trying to convince people I'm ill is sometimes harder than the actual illness...only sometimes. 
Image result for chronic illness meme


 Hey healthy person,

 Let me start by saying that I am not moaning. I don't want to whine about how hard my life is and how I wish it was different. As a rule, i don't like to bring it up because I don't want people to just push me to one side or put me in a box that they can just forget about. But when people tell me that it's not real or that they get tired too, something snaps. Anger is a very exhausting emotion for me so it takes a lot for me to react to things which annoy me but there are some things which need to be said.
If you ever see me out with friends or family, getting coffee, going shopping, playing with my baby nieces and nephew, having a night out or doing anything outside please understand that it took everything I had on that day to do those things and I felt so proud that I could do them. There was a time when I could barely walk up the garden path or make myself a cup of tea. I treasure every moment I get with the people I love. However, I still have ME on those days. I am still chronically ill. Just because I choose to celebrate the good and not dwell on the pain does not mean I am now magically 'better' or 'cured'. Please don't make me feel like I shouldn't do those things because 'if I was really ill I'd be in bed' or saying that I'm such an energetic person so I can't be ill. I spend so much of my time cooped up in my flat trying to regain my energy and I don't have to justify my choices to you. I spent an entire year of my life; approximately, 8760 hours desperately trying to get better. Changing my diet, my schedule and completely rewiring my entire mindset. Do you know how difficult that is? I changed everything about my life. Even my personality changed, I had to be more patient, calmer and have less extreme emotions. I didn't see my friends or family at all regularly. It was incredibly isolating and there were some days when I was just done.
So now, when I have enough energy and strength to leave my flat and have a laugh with my mates or even go out for lunch one day I grab it with both hands. It makes me celebrate little victories and makes that year worth it.
I know that it sucks when you're tired or have to walk home because you just missed the bus. But I hope you also realise how lucky you are. It can all change in an instant, like it did with me. And then you're stranded, sitting on the curb because you can't stand, waiting for an overpriced taxi to take you a 5 minute walk home. Where you curl up into bed fully clothed at 8pm hoping that this time the pain won't keep you from sleeping tonight.

 I also want to say that to all those people who try to understand and do support me, I can never say enough just how much I value you in my life. <3 You are wonderful human beings.
Take care
x






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About Me

"For God so loved the world that he gave his only son, that whosoever believes in him shall not perish but have eternal life" Hi! I'm a 21 year old student, and this blog is here to document my thoughts, feelings and events that happen in my life. I hope you'll enjoy reading them and get some comfort from knowing that you're not alone. So sit back, grab a cup of decaf tea and join me on this journey we call life.

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