Updated: Jul 13, 2019
“Coping with chronic illness”. This has probably been the most googled phrase on my browser since 2016. Not what you expect from your average 20-something, but that’s my life. When I get low, I go online. I Google that phrase and every other variation I can think of in the vein hope that someone will Grace me with a stroke of wisdom into how to deal with my Ehlers-Danlos, POTS, MCAS, hip dysplasia, and SI dysfunction. Yeah... I haven’t even said the whole list. Those are just the top-spot winners.
Don’t get me wrong, I have found a wealth of info online. But it took me years to absorb all the info I have now – through my own experiences, reading other’s, and researching. I want to give you my top 10 priorities on how to live a life that is tolerable and maybe even happy, with chronic illness.
I started writing this as one piece, but bro… it got long. I’ve decided to share this as – just like the title implies – a series!
Welcome to part one.
You need to Grieve
I know right – start on a light note, why don’t you?
But seriously. This is the first piece I want to share because it’s the first thing I wish someone had sat me down and told me straight right at the beginning. I remember shortly after being diagnosed with the first bombshell – POTS syndrome – I read a blog post from someone explaining how they had entered a grieving process after diagnosis.
At first, I thought is was the stupidest thing ever. Grieving because you’re sick? As if. Grieving was for when someone dies. When you leave your childhood home forever. Big things. Sad things. Being sick wasn’t a calamity for me. It was just one more thing to deal with. I had no idea how my life was going to change. And to be honest, it was low-key because the Doctors I had dealt with thus far had downplayed what I was dealing with so much. More on that later.
To a point, though, what I was thinking was true. Being sick is not a calamity. But – it is a massive shift in one's life. I mean, when you go from someone who can bound through a 10 kilometer no problem to someone who can’t walk to the store almost overnight, that shit is real.
Everything was 100% upside down, and I didn’t let myself grieve until much too late. I swept it under the rug after the first time I said “chronic illness” out load in a fight with my boyfriend. Even though I felt it shock me to the core. I used to love just going outside and walking around the block when I was at a loose end, and I didn’t stop to let myself feel the sadness even when my body stopped letting me do that.
You don’t have to listen to me, God knows I’m no therapist. But seriously. If you’re anything like me and you’re someone that tends to say; “it’s fine” and move on – listen to how you’re feeling. Just pause for a minute. Hell, you might not even know what you’re feeling. And mate, that’s totally OK! Familiarize yourself with what grief is. Talk to someone if you want to. Let yourself feel it. The only way out is through.
And it goes without saying – if you haven’t got someone you feel comfortable talking to, I’m here. Go on and send me a message. Or if you think that’s weird, there are a ton of Facebook support groups out there filled with so many people who are going through the same thing. They want to talk. They want to help. They’re always there, they’ve been there for me. Just reach out. You’ll be surprised.
Click here to see part 2 of my guide!
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