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Jessica Loe
Georgia, USA

Jessica has been through 27 surgeries in the last five years to help with cerebral palsy, postural tachycardia syndrome (PoTS), Ehlers-Danlos syndromes (EDS) and mast cell activation syndrome (MCAS). She still has a long road ahead on her journey to wellness but overall the medical treatment received in the past few years have helped Jessica to have better quality of life. She is now a mom to her two year old daughter and even though there are still things that she struggles with, Jessica learns what works best for her body while giving her child all of the love, care, and attention needed. 

Jessica says that a lot of her problems started when she was in high school. 

"I was used to them by the time I got pregnant, but in a way my pregnancy also brought a lot of new problems as well as made many of my current health challenges worse. My passing out got so bad that I wasn't able to work from the time I was about 9-10 weeks pregnant. I was in the hospital more than I was at home and lost 40 pounds while pregnant from just being so sick. It was definitely a lot harder on my body than I ever would've imagined. During my pregnancy I had so many gallbladder attacks that they had to take it out, I also ended up needing a pacemaker after my daughter was here, because they couldn't get my usually too fast heartbeat to over 50 BPM."

"I get told I'm faking my disability for attention, because I look fine. It doesn't mean I am. If you want to learn a language you take classes to achieve your goal.. For me, my goal is to be as normal as I can"

When asked what people should remember about when talking to people with disabilities Jessica says that a lot of people looking at her after a moment says that she looks too normal or too young to have this kind of problems. She gets told that she fakes her disability for attention and that's very common problem with invisible disabilities.

 

Jessica says that "I take the medications that I need to get me through the day and manage my conditions. I go to physical therapy and have a personal trainer as well as going to the doctor as often as they need to see me. I work so hard every day to achieve what everyone calls "normal", that people think I am which is great but again it doesn't mean I am. On the other hand, when people do find out about all of my disabilities and medical problems, they don't know what to say to me because they can't relate.. I'm automatically judged, even though minutes before I was regarded as normal.. Its very disheartening and most times I know that people don't mean to act a certain way but I wish people could not use that as a basis for judgement. I'm still just me."

Jessica wanted to share a message to other people with disabilities that not all conditions that people have are well known, not all are believed and not all are so simple. Same disabilities vary symptoms which adapt and change. They manifest in different ways as your body learns to fight it to try to perform its necessary function. She says "You know your body better than anyone can or will and you should always listen to it even if its not the popular opinion or someone else doesn't understand because eventually someone will and thats all you need to start making a difference in your health and quality of life. You're never alone, someone will always be fighting for something."

When it comes to Georgia, USA and accessibility, healthcare and general help for people with disabilities Jessica states that her home state isn't a good place to live in.

"I'm not sure about other countries or states but I feel like the system as a whole can use work. I'm stuck trying to figure out how to get my medication, because when I was younger I tried to get a job and do all of the things expected of me but ultimately couldn't due to my medical problems. I filled for disability, however because I worked and paid some into social security but not "enough" my checks are basically nothing. If I had had my parents apply for disability for me when I was under 18 instead of trying my hardest to just be a normal teenager with a normal life, I could've gotten 5x what I'm getting now.. There's something wrong with the system when trying to help yourself and contribute to society screws you over."