Invisible Illness Stories

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“Hi, My name is Danielle and I’m an actor and producer living in NYC. I chose the invisible illness necklace because I live with Lyme Disease and PTSD. For many years I lived with countless ailments and misdiagnoses. Eventually I got used to being sick. My life slowed down. I couldn’t remember my lines while rehearsing. Sometimes I would forget on stage. I felt out of it, highly anxious and depressed all the time. I knew there was something wrong with me but had no answers, even after countless trips to doctors, diagnoses and medications. In 2017, I was diagnosed with PTSD and sought Ketamine IV treatments. It was my Ketamine doctor who suspected there was something even more serious and more insidious than my trauma that was making me feel like I was slowly dying on the inside. He said my anxiety was abnormally high, that my psychiatric symptoms were so severe- that I was “losing my mind”. He asked me where I grew-up. When I told him “Minnesota” he looked at me with certainty and said “I think you have Lyme Disease”. By November 2018, I tested positive for Lyme and 7 other co-infections. I finally had an answer to my questions. My symptoms and co-infections were mononucleosis(EBV), pneumonia, chlamydia pneumoniae, Guillain Barre Syndrome, anxiety, depression, nausea, memory loss, severe and rapid mood swings, suicidal ideation, coxsackie virus, Babesia, Bartonella, insomnia, difficulty concentrating, brain fog, chronic fatigue, rage, chest pain, “air hunger”, muscle aches and more. The symptoms are countless. Lyme almost killed me. Not just my trauma- but also a tiny tick- were responsible for me staring death straight in the face. The thing is, I didn’t look sick.” @itsdaniellekaye

 

“My name is Allyssa and I wear the white necklace for invisible illness. An illness with no face, no-one knew I had- tore through my life a violent execution. I have CPTSD. Instead of sharing the daily control, struggles and symptoms of the condition-there are many, I want to share the power that this disorder can have on you. When repeated trauma is part of your development growing up, the symptoms of cptsd appear to be part of your personality and identity. Because of this, my own cptsd went unnoticed ...until it took my life hostage. One day at work, I was fine, and then I wasnt. My vision seemed odd, my ears rang, my body went flush. I lost control of my body, i had flashbacks of trauma I had blacked out, i also hallucinated terrifying images, I was in and out of what felt like 'normal,' mania, and flashbacks. I had a psychotic break. I went to multiple hospitals and was treated like a liar and drug addict, that's how people made sense of my behavior. No attention was given to my mental health.  I did a longer inpatient stay and even with 24 hour care-noone knew what was wrong. My family was scared they would never have 'me' back. Doctors disagreed over a diagnosis. It wasnt until 2 months after the psychotic break that we finally found out, this is past trauma rearing its ugly face! I was left broken, my brain a scattered fragile shell. I was barely human, had to be cared for by my family.  I'm now on a path of #recovery from my past #trauma and the psychotic break. Trauma is the most avoided, ignored, denied, misunderstood and untreated cause of human suffering. - Peter Levine. We need awareness, we need compassion and acceptance. People with #cptsd are misdiagnosed every day, just like I was in the beginning, but some never get the treatment, or the gentle care that they need. I wear my necklace to create an opportunity to inform people in a stigma free way and to be a safe haven for others going through what I am.  There is help, there is treatment, there are people who get you, you are not alone, it's not fake, it's not all in your head, and it isnt your fault! I am here, for anyone who needs someone to lean on.” @beautiful_fibro_disaster

 

“Hey I’m Kayla and my body is a mess. When I was 18, I was given a chemo drug to treat my endometriosis, and the drug destroyed my body and obliterated my Autonomic Nervous System. As a result, I have a whole bunch of chronic illnesses, all of which took years to be diagnosed because I was “too pretty to be sick”. Two separate doctors said those exact words to me. So I got the white colored necklace, to represent invisible illness. People tend to judge others at face value, I love the fact that this necklace can be a conversation starter through which I can advocate for chronic and invisible illness. I also chose the white necklace because the color white is made up of every single other color mixed together. There are so many other causes that I support and fight for and this necklace has the ability to open the door to conversation about all the causes I am passionate about!” @chronicallykaylasue

 

Invisible Illness

Invisible Illness Stories

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Invisible Illness