Living with an invisible illness or let’s face it, any illness is frustrating. It’s frustrating, and it’s hard and inconvenient, and yet it’s something we must live with every single day.
Now don’t get me wrong, I am and always have been a person who truly believes that everything happens for a reason, especially the hard things. So as I sit here and live my life with Ehlers-Danlos Syndrome, I tell myself constantly that you’ve been dealt this card because you have a purpose for it.
Maybe it’s to write this article to let people know they’re not alone. Maybe it’s to get me to do things I never thought I would; to face my biggest fears because I feel like I have nothing left to lose any more; like how I went Skydiving last week. Don’t get me wrong, I paid for it the next day, but I know for a fact that I would have never done that before. I wouldn’t have gone against my paralyzing fear of heights if I hadn’t gained the confidence of feeling like I can literally do anything since my body is hypermobile to the extreme.
If I can deal with dislocations every other day, then I can do just about anything, right?
Here’s the thing though, no matter what your outlook on your disability, it doesn’t mean that it isn’t still so freakin’ hard all the time; and if you’re anything like me, you tend to beat yourself up over the fact that you’ve become so beyond frustrated with it and yourself.
You get sad frustrated, angry frustrated, annoyed frustrated, confused frustrated, utterly overwhelmed frustrated, scared frustrated and sometimes even to the point of laughing with frustration because it’s almost funny how not normal most days are.
We get super hard and down on ourselves because we want so desperately to just be able to do, not only what we want, but have to do in order to live in this chaotic world.
I want to be able to get up every day and not have to think about how to get up and sit and stand and walk and move, without dislocating something and causing the rest of the day to be pure torture for me.
I want to be able to go to the gym and enjoy it again because that was my escape from the world for an hour and now it’s become a chore and my enemy on some days.
I want to be able to pick out an outfit and not just sit in my closet for 30 minutes wondering what will hurt my body and what won’t, what I can pretend to feel confident in today and what will just make me feel like I’m wearing my pain openly on my sleeve.
I want to me be able to wear my favourite heels without swelling for the next two days, and I want to be able to keep plans I make with people without breaking them because I’m too run down or too swollen or in too much pain.
I want to be able to enjoy the moments more without feeling claustrophobic in my body.
My point is that I get it. I get how frustrating and hard it really is. I also get how angry you become at yourself for always feeling like that and how some people can make you feel like less of a person for being that way as well.
But here’s the thing… BE FRUSTRATED!
Be so frustrated that it’s what gets you through some days and is what gives you that fight in you that you’re probably scared of losing. Be frustrated and know it’s ok because you are human. You are human going through a rare thing. You are human and guess what, you’re doing it! You’re living through something excruciatingly hard and painful and yes, frustrating!
Be so frustrated that you want to scream and fight and lose it and then once it passes, see the beauty around you. Let all of that flood out of you and see the good, whatever that may be to you, and then remember to be proud of yourself for what you’re doing. Not everybody was meant to live this life, and I know you’re jealous sometimes of the ‘normal’ ones. But those people, they don’t have the ‘super powers’ we do to get through each day and they don’t have the appreciation we do for the small things.
So yes, we are frustrated, constantly, and you know what, it really is ok. Do not let others tell you it isn’t and do not let others or yourself feel bad about it. Just remember to snap out of it. Just remember to feel it and to let it go for awhile so you can enjoy the lovely little things in life.
Also be sure to use that frustration as a positive force. For me, it’s writing and finding my passion with it and getting so frustrated that I want to help others. Ask yourself how you can use that frustration for something good. It doesn’t matter what it is, just as long as it is what is best for you.
How can you use your frustration as a force for good? Share it with us!
My name is Jennifer Manly. I’m 28 years old and was diagnosed with EDS in 2015. I do freelance marketing and writing and I have a precious dog named Seven. I love reading, writing, podcasts, movies and fashion and I adore working out and Pilates/Yoga, when my body permits. I’m an independent spirit who has learned that friends and family are the most important thing. I’m obsessed with bettering myself, learning how to deal with life struggles and practicing self-love. Having learned so much, my goal is to now help others, which is why I’m currently working on launching my blog, Serene Seven (coming soon). I admire those who smile through the tears, appreciate the smallest of things and who keep trying, even when it seems impossible. “Owning our story and loving ourselves through that process is the bravest thing we’ll ever do.” ― Brené Brown