As a kid I always couldn’t wait to grow up and live the “teenage dream “ I would see on all the scripts of the Disney movies and shows. I was just starting to reach that stage in life until it all changed. My life fell down the unscripted path.
“I had learned quickly that life doesn’t always go the way I want it to, and that’s okay. I still plod on.” Said Sarah Todd, who struggled with a rare and serious neuro-immune disorder. The name of this disorder is Acute Flaccid Myelitis that causes inflammation and damage to the spinal cord.
Before I knew it my life had taken a complete 360, it was the first time I felt like I genuinely didn’t have control of my own life. My childhood was taken from me suddenly it felt like I was spending more time at hospitals then at school, I felt so out of place being the only kid in a waiting room full of elders, the sports I grew up playing were now memories ever since my parents and doctors “didn’t think it was worth the risk” . Every day I realize there’s more and more in life that I had been taking for granted , simply just being a kid I’ve been forced to grow up faster than others because I’ve been in a position many people my age haven’t. But as time goes on you realize that there’s nothing you can do about it and you have to figure out how to continue life the best you can in your situation .
“ If opening your eyes, or getting out of bed… is the daunting Mount Everest you climb today, that is okay.” Said Carmen Ambrosio, who is the author of Life Continues: Facing the Challenges of MS, Menopause & Midlife with Hope, Courage & Humor, where she shares her personal journey of chronic illness.
The worst thing about having an invisible illness is how misunderstood you are by all the people you surround yourself with. Even if it’s not on purpose, someone on the outside will never fully understand how you truly feel ,no matter how many times you try to explain it they won’t get it. Teachers still expect you to be exactly like the other students no matter how you’re feeling or how many days you miss. Some days you physically can’t get out of bed and people think you’re “Lazy “ or if you tell your friend that suddenly you don’t feel like hanging out they think that you’re just canceling at the last minute. But they don’t realize that it sucks more for you knowing that it just adds to the list of another thing your health got in the way of .
“ Healing takes courage , and we all have courage , even if we have to dig a little to find it .” Said Tori Amos an American singer-songwriter and classically trained pianist, who throughout her career has been open about several physical and psychological challenges she’s gone through.
When you suddenly get sick out of nowhere it catches you off guard obviously you weren’t expecting it , I mean why would you. Just the other day you were running around eating whatever with no care in the world, and now you watch your every move seeing if something will cause a flare up or make you feel worse than you already were. I always say one of the hardest things about going through something is giving yourself the courage and the little pep talk you need to actually get through it . And sometimes you can’t do that by yourself. You might need to ask someone and that is perfectly okay , healing is to do what you know is right for yourself and what will benefit you the best.
“Being sick meant, at any moment, the people I cared about could decide I wasn’t worth the trouble I put them through.” Said Lillie Lainoff, who is an author who is very vocal about her struggle with POTS in her debut novel, One for All.
When you carry an illness you also find yourself carrying this guilt because you tell yourself that your health is annoying and weighing down the people around you. Even though you know that you obviously can’t help it you think those around you are secretly tired of the appointments or the complaints. Whenever you start to feel like this you need to take a step back and think about who you surround yourself with , because the right people will understand what you’re going through and support you instead of making you feel like a burden.