Hi everyone! My name is Jordyn and my hobbies include cuddling my service dog, practically inhaling books, gardening, blogging at http://thechronicallyunimaginable.blog, and being an advocate for chronic illness and mental health conditions.
This story begins when I was 14 years old, halfway during my freshman year of high school. I had just transferred from going to a public high school to taking classes online due to anxiety and depression. This is when I started to begin gaining weight rapidly, even though there were no changes in my diet or exercise regime. Doctors didn’t look into this at all. They just labeled me as having childhood obesity, even though I had been going to them prior to the onset of my weight gain. I also began to swell all over my body. So much so that I had to get several different sizes of clothing for days that I would be more or less swollen. Then the pain began.
I remember feeling a burning pain, like my body was on fire, leaving me unable to move. This is what started my frequent E.R visits and long hospital stays. Doctors would preform tests, but never would an answer be found. About six months into this, when I was 15, I had surgery to remove a twisted ovarian cyst. I got my first diagnosis of Polycystic Ovarian Syndrome and was put on hormones to stop the formation of more cysts. During this time in my life, I was very depressed. All the weight gain, swelling, and pain left me unable to do things that my friends were doing. It also gave me a horrifically twisted self image that was only reinforced by the doctors at the hospital saying I needed to lose weight and I would be better.
It was through the sheer persistence of my mom and my stubbornness that we continued on to each doctor. We needed referral after referral and got good at “convincing” doctors I was not well. I spent a lot of time going back and forth from a specialty hospital several hours away from home, treating my daily migraines, pain, and other symptoms that continued to pop up. There also were several stays at some in patient behavior health units as I was also dealing with my mental health at the same time. No matter how low I felt or how bad my body got, there was always something in me wanting to fight and make it through this.
I have been to a countless number of doctors and specialists, only to be referred on to others. It was two years ago that I was physically at my worst. Bedbound, unable to move or go outside, I had a mission. While it did make me sad to be in that state, I decided to love myself. There had been so many years spent looking for an answer and I questioned myself of the possibility of not finding one. Looking within myself and everything I had gone through, I was okay with that. I was okay if I spent the rest of my life like this, because I chose to love myself and to restore my self image. Ironically, we were able to find out two huge diagnoses shortly after this that have improved my physical pain greatly.
When I had that “Aha” moment, I knew I wanted to be able to help others like me. Knowing all the pain that I had been through in my journey, I wanted to give the same hope that I had found to others. So when I started to gain more mobility, I began writing for the Mighty about my experiences and shared my story other places online. This led me to start a blog at the end of February, in which I named The Chronically Unimaginable. I decided to name my blog in this way because the journey we all go through with chronic illness is unimaginable.
To date, I have been diagnosed with Hereditary Lymphedema; Erythromelalgia; Ehlers Danlos Syndrome Type 3; Chronic Fatigue Syndrome; Postural Orthostatic Tachycardia Syndrome; Polycystic Ovarian Syndrome; Daily Migraines; Asthma; and an inability to process folic acid. I don’t know if there will be more diagnoses in my future or not, but to me it doesn’t matter. I have found my purpose in serving those in the chronic illness and mental health communities. My hope is that I can prevent at least one person from experiencing the doubt, worthlessness, and self image problems I did. I may not be able to take away their physical pain, but I can be there to show that there is hope beyond chronic illness and/or mental health conditions.
Contributor for the Mighty
Ambassador for the Chronic Disease Coalition
Brand Ambassador for Ivye Wear