Living with chronic illness can be fraught with hurdles, but when that journey begins at at a very young age, the challenges seem insurmountable. Our guest post comes from Angela, who lives with dysautonomia,  a medical term that describes a group of complex conditions caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the gastrointestinal system, metabolic system,  cardiovascular system, and endocrine system.

Angela blogs about living with chronic illness at Take With Sugar. Her favorite advocacy group is Dysautonomia International: http://www.dysautonomiainternational.org/

You can find her on social media at: 

• Twitter: @takewithsugar
• Facebook: https://www.facebook.com/TakeWithSugar/
• Instagram: @TakeWithSugar

Angela’s Story

When most people plan their wedding, they aren’t trying to make accommodations for someone who faints. When most young adults go to school, they don’t worry about knowing where every common area with a couch is. When a 23-year-old buys her first home with her new husband, she isn’t worried about wheelchair accessibility. No one, let alone a healthy and active 19-year-old, expects to wake up sick one day, and never get better. But you did. Young people your age are partying, going on adventures, having babies… And you’re on an adventure all your own.

When you first start exhibiting symptoms, life seems a burden. You go through so much of hearing “it’s all in your head,” that you begin to believe it. You try and you try to “fake it ‘til you make it,” only to end up worse than before. You go from being self-sufficient and active, to spending many of your days in bed because even just sitting up seems too much of a luxury for you.

These thoughts begin to creep into your head that you’ll never be “normal” again, so why even try anymore. Doctors pump you full of psychotropic drugs, and even those don’t help. Therapy becomes a joke. You fall so far down into your own mind that suicide becomes your only option.

 And then you snap. You realize that life can’t just be about this. Life can’t be being stuck in bed, on medication that does nothing for you. Sleeping isn’t life. So, you begin to research. You throw yourself into finding some sort of other answer to what is going on. And there it is. A disease that could answer all your problems! You rush to the doctor; you fight for the testing. You finally get the answer! You have dysautonomia! And for a split moment, you’re over the moon.

And then you hear, “but there’s nothing we can do to help,” and you heart sinks. This was supposed to be the answer. You were supposed to be given a pill and be able to go back to being a teenager. That’s what doctors are for. They make you better. How could there be no answer? How can they be content, sitting in their little chair, watching you crawl into their office only to send you back out the same way.

They throw common “cures” at you. Eat better. Exercise more. But how can you do that when you can’t even stand. No one has any resources for you. Your health insurance company doesn’t even believe in treating what you have, and your doctor refuses to learn what it even means. You turn into your own doctor. You find others with that you have, and you swap stories. There IS medication that can help. There IS lifestyle changes that lessen symptoms.

Finally, you’re starting to feel better. Slowly, you move more. Shopping is a treat now, not a burden. You still have your bad days, but you rest, you don’t give up. Smiles become a daily occurrence once again. You can feel life become bearable.

Though, you begin to think back to where you were 3 years prior – staring down the barrel of a gun with no guts to pull the trigger. There’s someone else at that exact moment right now. How can you help them? Write. Pick up your computer and share. One day, that entire phase will have gone, and you will be to thank. Those who shared and advocated and made sure doctors began to learn. Chronic illness isn’t an easy answer, but it’s even harder on those that have to suffer in silence.

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Thank you, Angela, for sharing your powerful story with us!

If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!