My Chronic Illness Story
A tale of genetic mutations, childhood trauma, toxic mold exposure, severe disability, critical need, and unique opportunity.
MY STORY
I was born with multiple gene mutations that predisposed me to mental and physical illness. Throughout my childhood and adolescence, I had significant and undiagnosed mental health disorders, as well as a handful of traumatic experiences. My mental and physical health began rapidly deteriorating towards the end of college, when I caught mono (and never really recovered), developed a much more severe level of PTSD (at the time, still undiagnosed), and was exposed to copious amounts of toxic black mold. The combination of these genetic, environmental, viral, and emotional stressors led to me developing severe inflammation, specifically a disorder known as Chronic Inflammatory Response Syndrome (CIRS). By the time I was 23, I was mostly bedridden. Now at age 34, it's been over a decade of severe chronic illness. Over the past 6 years, I finally got four mental health diagnoses (including severe complex PTSD), my CIRS diagnosis, and various other diagnoses (such as mast cell activation syndrome, small intestine bacterial overgrowth, irritable bowel syndrome, and multiple chemical sensitivities). I moved to Mississippi about 9 years ago, and without knowing it was living in somewhat moldy conditions. 2 years ago I got married and moved into yet another moldy apartment. Finally 9 months ago, in July 2022, I moved into a mold-free apartment! (More on the difference that has made in a minute.)
MY SYMPTOMS
I have a host of debilitating symptoms, chief of which are severe anxiety, post exertional malaise, post exertional symptom exacerbation, severe fatigue, multiple food sensitivities, severe brain fog, chronic dehydration, muscle weakness, breathing problems, obsessive thoughts, regular nightmares, and exercise intolerance.
I experience the vast majority of the following symptoms on a near daily basis.
WHERE I'M AT NOW
Before I moved to this apartment, my treatments were about 95% focused on "treading water" (i.e. not getting worse, staying alive, trying to digest food and hold on to water) and 5% working towards healing. Since moving, this ratio has gradually transitioned to 80% treading water and 20% working towards healing! We have seen little bits of progress in so many areas of my mental and physical health! THIS IS A CRITICAL TIME, where I'm still very disabled by multiple chronic illnesses, but where I also have a unique opportunity to pursue greater levels of functioning—moreso than I have for the previous decade!! I'm still in bed for most of the day. I still have to manage my energy extremely carefully, or else my symptoms quickly spiral downward to dangerous places. My PTSD is noticeably improved from 3 years ago, but still affects me on a daily basis. I've got a fantastic licensed counselor I see about three times a month. I've got a wonderful nurse practitioner who's treating my physical health issues who I see once every two or three months. I've got a wonderful psychiatrist I see every few months, as well as a microcurrent neurofeedback practitioner that I see weekly.
THE GOAL
Here's the thing. Most people with Complex PTSD and CIRS deal with some degree of residual symptoms for most of their lives. BUT most people ALSO make significant progress in functioning and healing! This is where I need community care to come in. A couple months ago my husband got a new job at a wonderful company, and his salary makes a significant difference in meeting our financial needs. But it's not enough…particularly with my specific health needs. I need help to be able to afford to keep living in this clean apartment, to keep eating food that my body is able to tolerate, to keep taking systemic enzymes that are healing the scar tissue in my lungs making it easier to breathe, to keep going to therapy to work through the complex traumas, to stay on health insurance which makes my medications and treatments more accessible, to continue the microcurrent neurofeedback treatments that are calming my brain and body, and to work on repair of cells and systems that have been wrecked by inflammation and chronic / acute stress.
THANK YOU
If you made it all the way through it's write-up, thank you for reading! If you want to read more details about my story, my current needs, and 8 different ways you can support me in this unique stage of my healing journey, you can check out my GoFundMe page, where I post regular updates.
https://gofund.me/5fa0df1c
Some of you have cared for me so faithfully over the years! For those who have reached out or prayed or given or grieved—you are so appreciated!!
Love,
Hannah