It’s Time to Meet Kacie C.
Hello, my name is Kacie C. A lot of people ask me how I am so strong, but the real answer I wish I could say is, I don’t want to be. I wish I didn’t have to be strong every single day while living with rare diseases (most of which you’ve probably never heard of.) My entire life changed because of invisible illness and rare diseases. To name a few of the most prominent ones… Ehlers Danlos Syndrome, fibromyalgia, hyperthyroid, hypertonia, heart defects, chronic migraine, asthma, and chronic fatigue syndrome.
I wish every single day I could be healthy, but I have come to realize that this is the life I came here to live. I am grateful even to be telling my story today.
The youngest I was diagnosed was three years old. This was for my asthma. At age seven they diagnosed me with chronic migraine disorder. However, most of the complex diagnoses didn’t appear until my later twenties and early thirty’s.
A lot of people make assumptions when you say you have disabilities (visible or invisible). It’s not uncommon for me to be retaliated against by an able-bodied person who believes their convenience is far more important than the pain or danger I may be facing.
I have several accounts of people being violent towards me because of my health conditions. Some able-bodied people see an accommodation being made for individuals and assume it’s “special treatment,” but there is a real truth to it. Without these accommodations, big or small, people living with disabilities would be even more vulnerable to potential injury or a flare-up than they already are.
“I can tell you, my illnesses maybe invisible to you, but for me they are all that I see… all that I feel… every single day.”
If there was one thing, I could tell these people in my past who have pushed me around for who I am it would be, “Please… just be kind. You never know what internal battle someone is going through at any given moment.”
Due to my rare diseases, I live a fairly immobile life. Yes, I am able to walk around on my own and survive without a wheelchair… but it is also perilous at the same time. I suffer from dizzy spells often, which cause me to pass out at any given moment, and I have limited range of motion due to my hypertonia, Ehlers Danlos Syndrome, and fibromyalgia.
“My rare diseases were more than just a diagnosis; they were a new way of living my life too.”
I had to give up a career I loved, hobbies I was passionate about, and even an active social life due to the never-ending pain… Although my chronic pain took a lot from me, I can say it did give back to me as well. If it wasn’t for these conditions, I wouldn’t have connected with unique people just like me from all around the globe. People fighting the same silent battle as myself. This is comforting, in it’s strange little way, finding sweetness in our suffering days. And even though I have friends I can reach out to by just the click of a button, it can still feel isolating at times. Those days you feel worse than ever before, it’s easy to get lost in the sea of your worries, but I must stand in the strength of mindfulness.
“You are so valid, this road can be daunting and scary, but along it can be the most loyal people you will ever find.”
I must be present with every single feeling in my body. What it needs, what it wants, and if the sensation I’m feeling is simply pain or a potential injury. It becomes very tiring, always having your fight or flight mode up against your own body… The body releases cortisol and adrenaline hormones in times of immense stress… now mix this with the constant pain from rare diseases, and somedays I am barely being held together at the seams.
But I’m not the only chronic pain warrior who struggles to find reliable support… I am so lucky to have my husband, but not everyone can say the same. I have a close friend who lives in Nigeria. She struggles to find the support she needs most days, and so do countless individuals living with chronic pain and rare diseases.
A message I want to emphasize to all chronic pain warriors and even able-bodied people… life is hard for everyone. Whether you are disabled or not, you are constantly faced with threats from the outside world concerning your survival. Covid-19, Monkey Pox, and even the flu… all of these makes living a happy life just this much harder, but we still have the opportunity to show up every day and spread kindness and compassion, nonetheless.
No, you do not have to go out and change your entire lifestyle or give up your life to help others in need… but you can start by being compassionate for those who do struggle more than most in life with the simple things. You can help by offering your seat to a disabled person in public and not judge them in the process. Make room for those with mobility aids in public to move past you without the shame of rolling eyes or loud sighs.
All of these actions may seem small in the big picture, but to someone living with rare diseases and invisible illnesses, they hold the power to turn a terrible day into a bearable one.
I am Kacie C.
Author: Shilynn Marshall
Chronic pain warrior: Kacie C.
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