When I Realized Being Disabled Isn't the End of the World
Life is uncertain. Nobody knows what the future holds for them, regardless of how much they hate to admit it. For me, I love admitting that.
It means I didn’t had a say in deciding whether or not I wanted to be disabled and sick with over two dozen chronic illnesses. Realizing I am sick through no fault of my own is really quite freeing, and I have come to accept that this is and will forever be my life. My experience can be utterly heartbreaking, but I would be doing my pain an injustice if I did not thank it for everything it has taught me. Here are some lessons I think we can learn from living with disability and chronic illness.
- It’ll show you who is really there for you. People may grow weary of your “excuses” of not being able to go out and socialize etc. but that is not a reflection of you, it is a reflection of society’s ignorance. You deserve somebody who really loves being in your company, even if your company is laying down on the sofa together and binge watching Netflix because you’re in a pain flare and your joints feel like lava coursing through your veins. I have learned there aren’t very many people who are willing to accept you for you and treat you like an actual person when you are sick, but the people that are there for you and stand by you throughout are the ones who genuinely want to be in your life. It’s a hard pill to swallow, but by now I’m used to that.
- It is more than OK to not feel optimistic about the rest of your life right now. I get frustrated at the thoughts of what my life could’ve been had I been born without a genetic condition that spiraled into the decline of my health. I could’ve changed the world, I tell myself — I could’ve been anything I wanted to be. But in reality, I am already changing the world, my world — slowly, by getting my writing and photography out there. I am a disabled artist. I am a disabled writer. I am at university studying to get my dream job and I demand to be seen. If you have a passion for something, don’t let it die because you are chronically ill. If you have to give something you love up because of your health, pick a hobby that is less physically draining, but never lose the fire inside of you that keeps you battling through each day.
- Pain is just part of you, it is not you entirely. And while it takes up a bigger portion of you (and your life) than for many others, you are worth so much more. Just because you’re in pain does not mean you are deserving of it, nor does it make you a bad person for experiencing it or needing to ask for help. It is so easy to start blaming yourself for the things out of your control simply because you are the one feeling it, so you must’ve done something to deserve it, right? Wrong. We got dealt a crappy set of cards in life, what keeps us going and pushing forward is what we do with our lives to better ourselves, for example: accepting the fact you need a physical aid to help yourself, talking through your thoughts with a therapist (if you are able) or even just accepting people’s offers of help when you need it most.
- Some things are absolutely worth the tiredness and the pain, even if that means being in bed for the next week. It is so difficult to decide what things are important enough to cause you uncontrollable pain for the foreseeable future, but I promise — some things are worth your pain. Half the battle is deciding what is.
- Your mental state is very much linked to your pain levels. When your pain spikes more than your what your “normal” threshold is, you may begin feeling helpless and useless, because you can’t do regular things. You may once again start wishing that 1) you were never born, or 2) you never got sick (even if that is impossible). There will be (regular) periods of time, where you don’t want to or feel as though you can’t communicate with friends or loved ones, even when they only want to help. That is OK — take your time.
- The sun will rise again in the morning. You will live another day, which at times might seem terrifying if you tell yourself “it cannot get worse than this” — but it might, and at times it has. But it should also be a reassurance to you as that means you have gotten through each and every one of your bad days. You really can do this.
- In a world that seems to understand little of disability and chronic pain there are still so many people who want to learn. There will be people who will love you regardless of the hardships you face, even when you think that is more than impossible. There are people out there who are willing to accept you for you, even if that means taking on the uncertainty of your health. Please give people a chance; you never know, they might surprise you.
- There is a huge “spoonie” community out there. Perhaps you’re like me and it is hard to find somebody you can relate to in the real world. Twitter is in my opinion the best place to find people of similar age who understand you and who are open to being chatted to. I have formed many online friendships all over the world with the people I have found on Twitter. Facebook groups dedicated to your condition can be helpful when you are trying to match up your symptoms to get an answer or diagnosis. Hell, there are even apps on your phone that let you connect with other disabled people now!
Each and every day I learn how to cope with my ever-deteriorating health, because there is never a time where I am not dealing with a new form of pain. I know I have to be flexible (haha, Ehlers-Danlos joke) and mold with my new pain or symptoms. I sometimes cry myself to sleep at night because I am terrified of what my life has to offer me in the future. Underneath the facade, I’m not the strong person I pretend to be for everybody else’s sake; I’m still a terrified little girl at heart and I think I always will be. Disability and chronic illness have taught me to accept the things I can never change and I will. I will continue to embrace the uncertain future that lays ahead, because I have nothing else left to give. I will keep fighting to stay alive.
Disability has taken so much from me, but in exchange it has made me into the best person I can be, too.