“Am I disabled?”, is the question that I am currently repeating to myself in my head. I feel so insecure and guilty about adding this label to my self-identity, as though I’ve chosen this type of life path for myself and am the one to blame for my current change in health status. My answer to this question comes with some very large, life decisions, but is one that is a practical solution to many of my current life struggles with co-occurring, disabling conditions.
Let’s just let this question sink in for a moment and allow me to give you some background information into why this label is so difficult for me to accept.
I’m 32 years old and never struggled with physical illness during my childhood. I pretty much lived a picturesque life throughout my early years, with the normal highs and lows experienced by any young person growing into themselves. When hormones hit in my mid-teens, my emotions became very chaotic and I started partying as a form of escape from low self-esteem and other hidden insecurities. These adolescent life decisions led to some trauma and more severe mental health issues. ( I figure I should be honest.) However, shit hit the fan in 2007 when I was a junior finishing my college degree at Virginia Tech, the same year as the massacre killing 32 students and faculty. One of the victims was a friend I really looked up to as a role model. I often looked to her for advice about men, friendships and “growing up” as she was a few years older than me and wise beyond her years. I took her death hard, but later realized I really went into shock.
It was exactly one year from the shootings when my mental health became completely unmanageable. I had to withdraw from college, return to my parent’s home, and get serious medical help. This experience led to my first diagnosis with a qualifying disabling condition, Post Traumatic Stress Disorder (PTSD). Although I was able to get my symptoms managed enough for me to finish the last semester of credits needed to graduate from college, I never really fully recovered from that breakdown.
After escaping an emotionally abusive relationship in Virginia, I returned to the area my parents were living in Ohio. I am not from Ohio, nor was I very familiar with the area when I moved here. My only experience was the short time I lived here (maybe 3 months?) during my mental breakdown in 2008 – not a recommended way to get a feel for an area. I was not happy to move here, but I accepted this place as a blessing considering the situation that drove me to move here. (That story could be an entire book, so more on that in another post.)
I’ve now lived in Ohio for 5 years. I own a home, am in a healthy relationship (engaged to be married), and have two dogs. I literally have a little white picket fence outside of my cheerful, yellow home. It really does look nice from the outside and I’m very grateful for all I have. However, what most people don’t know from just looking at my life is that I live every day with an invisible illness and chronic pain. I believe that I have been showing symptoms of my autoimmune/hereditary chronic pancreatitis since my early to mid 20’s, but was not officially diagnosed until September 2017, after a short-term disability leave of absence I took from my employer at the time. Since my diagnosis, I have been “laid off” from my job as a Digital Marketer and lost another job at a local non-profit due to my inability to manage my pancreatic symptoms.
I have now been unemployed since August 2018 and am really doubting my ability to return to a normal, full-time 9AM to 5PM job. It would be my third attempt at working full-time in less than a year and a half. I’m in desperate need of medical care and have not been able to get the care I need because of my employment status. I have applied to Medicaid, but I’m not even sure that coverage will do much for all of the specialists and medications that I need to manage my life. I’m praying that I won’t have to switch doctors.
I am currently unable to manage my flares, even by following my doctor’s dietary advice. This has led myself and my doctors to believe that there may be something else to my condition. Due to malabsorption and consequential malnutrition, I am extremely fatigued all of the time. I wake up daily on a fairly high pain level and have had to start taking pain medications daily. I’ve been referred to a pain clinic which my doctor hopes can get me to a functioning level for employment. We will see how that goes, but only time will tell.
I think it’s important to realize like most social benefits, this is not something anyone wants to do. If it were up to me, I’d be fit as a fiddle and following my dreams (both career and personal.) As a natural extrovert, sitting at home absolutely drains me and I plan to try and work part-time as soon as possible. I am a very independent person and it can be a learning process to have to rely on others, including our own government assistance programs. I have supported paying into this system and have worked for over a decade at this point. However, that doesn’t make it easier.
My nurse and doctors have already told me that they support my decision to seek social security. To begin with, I really need the health insurance to get the care I need. I plan to get a lawyer and begin compiling all of the items on this checklist from the Social Security Administration. I will be going to my local disability office in hopes that they will help me navigate this system in the easiest way possible. So far, I haven’t been able to receive much help over the phone or via their websites.
Wish me luck on this journey into the unknown.