How I Find Strength (and Humor) When My Body Tells Me to Give Up

“No difficulty can discourage, no obstacle dismay, no trouble dishearten the man who has acquired the art of being alive. Difficulties are but dares of fate, obstacles but hurdles to try his skill, troubles but bitter tonics to give him strength; and he rises higher and looms greater after each encounter with adversity.” – Ella Wheeler Wilcox

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I’ve always been determined to reach goals, ever since I was a small child. My parents always encouraged me to do my best, and go above and beyond that. They encouraged me to do what I could, and helped me where I fell behind. I’ve dealt with adversity all my life. School was difficult as I lived with an undiagnosed learning disability, my parents’ divorce was a struggle and my health has gotten worse since I was around 9-10 years old. What started out as gastrointestinal issues turned into dysmenorrhea, turned into joint pain – the list goes on.

Giving up has always seemed like the easiest option, or, the least painful. But it is not in my spirit. Giving up just isn’t an option for me. I am too strong-willed, and defiant and a warrior. I also know of the good things to come if I don’t give up.

As of now, at 21 years old, I live with various diagnoses and disabilities, while I remain undiagnosed for some sort of neurological disease that is taking over my life. Most days, I can’t walk without severe spasticity all over, and I generally use a walker to get around. Eating normal meals is out of the question, as I deal with dysphagia, and have been told I might need a feeding tube if things get worse. My balance makes me very uncoordinated, and the double vision can strike any moment. My intestines are inflamed, and I deal with gastrointestinal issues from mouth to the end of the digestive tract. That’s just a small picture of what I face every day. On top of that, I juggle doctor’s appointments, volunteering, classes and assignments. I’m very busy, and honestly, rather overwhelmed! All of this takes a toll on me mentally, physically and emotionally. And lately, I feel like giving up. I want to stop going to school and just hide in my bed all day. I don’t want to care about anything at all.

What gives me hope is the people in my life, and the idea of a better future. I’ve cut all toxic people out of my life. I have good friends, supportive family, an amazing boyfriend, along with the everyday little things that cheer me up. I try and make light of my not-so-ideal situation. I joke about living with Ehlers-Danlos syndrome, such as saying, “Oh yeah, dislocated a joint. I popped it right back in – no biggie!” I also suggest the idea I’m a drunk toddler learning how to walk, as I hobble around wherever I go, and I think people come up with the silliest of ideas! I also have friends and family who are chronically ill that just “get it,” and don’t shame me for being sick, which is obviously a thing I can’t control. I constantly joke about life and try to have the most fun possible, even when I am in pain.

I view every day as a gift, no matter how difficult, and even if I am having the worst day possible, I can always find something to make me happy. I’m not ignoring reality; I’m simply embracing it in the best way I can.

There’s also too much bad stuff in the world for me to not try to make a difference. The world needs a little more light and joy, and if I can be a part of that, then I will gladly give what I can. I hope to get involved in disability advocacy, along with being a public speaker, who can change people’s minds in a positive way. I hope to volunteer more and give back when and where I can. I feel like the adversity I deal with, and have dealt with, makes me a stronger person, a kinder person and, most importantly, shaped me into who I am today.

So when my body says, “give up,” I say, “watch this!”