Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health? I am 17 years old and from Ohio, America. I have Elhers Danlos Syndrome type 3, postural orthostatic tachycardia syndrome, eczema, mast cell activation syndrome, degenerative disc disease, scoliosis, and vocal cord dysfunction along with severe allergies. This can cause me generalized anxiety and sometimes even some depression.
When did life change for you? When I moved to Ohio from Pennsylvania when I was 15. I suddenly became injury prone. I remember my first big injury was frequent subluxations of my ulnar nerve, originally at cheer camp. At that time, I had no idea anything was really wrong. I truly thought I was just being careless and got hurt as a result.
What was life like before diagnosis? I was always a healthy, energetic, and happy girl. I have always been extroverted and full of life. I would bruise easily, but I always brushed it off. After all, what kid doesn’t get hurt now and then?
How has your diagnosis changed your life? I have had to quiet high impact sports, specifically cheerleading. I also have appointments to help strengthen my muscles and help control my symptoms.
Please describe the best you can a day in the life of you? I wake up and do physical therapy stretches. Then during the school year I attend a rigorous high school and during the summer I go to work. I am a nanny for two wonderful children. I am also a hostess at a local pizza parlour. I typically wear some type of brace for a current injury or to prevent one from getting out of hand. I also have physical therapy and other doctors appointments once a week or so.
What was/is the most challenging thing you have faced because of your diagnosis? Everything went silent. The monitors and doctors panicked voices . Everything went dead. The first night was the worst: I was in the paediatric intensive care unit. Stress levels rising, hearts breaking, and tears being cried. Everything went quiet as I struggled to breathe. When I was 16 I went into full fledged anaphylactic shock. It was terrifying. The not always knowing why my body does what it does is the scariest and most difficult part for me.
Do you find that you can keep up with others? Sometimes it is difficult to keep up in the social scene, because there are things too hard on my body to do. However, for the most part my school life has stayed similar to those in my class as far as grades and extracurriculars go. Getting sick really showed my who was there for me.
What would you tell others living with your diagnosis? Some days, quitting will seem like the only option. But I promise, it NEVER is. Sometimes living feels life just surviving, but truly one day you WILL thrive. We are on this earth for a purpose.
What would you like to tell others that don’t live with a similar diagnosis? Please please please never ever judge what you do not live with. You never know what it takes for someone to get out of bed and face the day. Additionally, many people hide their illnesses because they don’t want to be looked down upon. Someone’s frequent injuries are real and tragic to them, not something to laugh at or make fun of.
What have you learnt on your journey? I’ve learned, as bad as things get, it ALWAYS goes up. In getting sick, I learned to balance on friends and family. In missing a day of school here and there, I learned how to better communicate with teachers and my school community. When in the hospital, I found my future dream career as a child life specialist. When faced with scary obstacles, I learned to put my faith in my religion.
Is there anything you would like to add about your journey? If you take one thing from my story, please understand I am not weaker than other people because I have this disease, in fact in many ways. I’m stronger because of it. This disease was NOT a choice, but it is something I have to live with and learn to thrive with. Overall, just love everyone. You never know what someone is going through behind closed doors. You can follow my progress and treatment or ask questions on :
Wanting to learn about some of the conditions/diseases mentioned? Here are some links…
What is EDS (Ehlers-Danlos Syndrome) https://ehlers-danlos.com/what-is-eds/
What is POTS (postural orthostatic tachycardia syndrome) https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome
Vocal Cord Dysfunction and what it is like http://www.aaaai.org/conditions-and-treatments/related-conditions/vocal-cord-dysfunction
“Thank you so much Karissa for sharing your journey with me and the rest world. You truly are brave. Hopeful always.” -Anna