Not a day goes by that I don’t wake up with anxiety over getting older every day because getting older means more responsibilities, more bills, and more problems. I’m not too worried about the responsibilities, I say bring it on! However, I’ve been living with an IBD flare-up for almost 11 months that I haven’t been able to get under control, which has changed the course of my life and career path. Had my health cooperated with me, I was supposed to be in another country, living independently and working on building the career I had dreamed about for my whole life. IBD and IBS took that away from me. I am now 25 years old and trying to start my life over while I watch my peers are smashing their goals, achieving new heights in their careers, getting married, having children, having full-time or well-paying jobs, traveling the world, living on their own, and able to afford to pay for their meals. My list of worst fears got longer today because a year from now, I will not be on my family’s health insurance plan–which is scary for someone who has lived with multiple chronic illnesses her whole life and has to work multiple odd jobs to make a living. I have to worry about gathering money for private insurance and being denied or charged a higher amount due to my pre-existing conditions.
I’m not writing this post for anyone to feel sorry for me nor am I here to complain about my life. I just want to write a blog post that is more personal in nature so that there is more awareness raised about the struggles that people living with chronic illnesses and mental health disorders have to face. Society stigmatizes chronically ill individuals and individuals with mental health disorders on a regular basis as we as a society somewhat covet the idea of having a secure job working under someone else. Earning money, having a solid job, being able to have reliable transportation, and living independently are some truly empowering things for an individual, but when your independence is taken away from you through no fault of your own, what do you do?
To answer that question, I would need to present some more information first. According to RAND Corporation, almost 60% of American adults are living with at least one chronic condition, and 12%, which is roughly 30 million, are living with 5 or more chronic conditions. The AARDA reports that around 50 million Americans, roughly 30 million of which are women, suffer from an autoimmune disease. The National Alliance on Mental Illness (NAMI) has estimated that 46.6 million adults living in the US experience a mental illness annually, but 11.2 million adults in the US experience a severe mental health disorder that limits major life activities. These numbers may not mean much to you, but as someone living with a plethora of debilitating invisible disabilities, these numbers somewhat define my life. I wake up every morning hoping that maybe today will be a good mental health day, and that maybe today, my health issues won’t bother me to the point where I only have enough energy to focus on healing.
To keep this post relatively short, I won’t go into detail on every chronic condition I have, but because there are millions of people suffering with a similar reality I have to face every day, I think it’s important that more people speak up about it so we can shed some of the stigmas surrounding being chronically ill. I spent my 25th birthday crying about how many important years I’ve lost to battling a chronic condition, whether it be mental or physical. My freshman year of college was lost mainly due to epilepsy. What was meant to be my sophomore year of college was lost to respiratory issues, specifically asthma, and the freakish hell of depression. I’ve been living with weird gastrointestinal symptoms for a long time, but it’s only been this past year that all of the gastrointestinal issues came down on me hard. Despite losing almost a year to IBD, IBS, SIBO, and other gastrointestinal issues, I wouldn’t say this is the most difficult battle I’ve fought considering that Post Traumatic Stress Disorder has claimed 7 years of my life.
I have never gone into detail about my struggle with PTSD on my social media due to the stigma that comes with being someone with PTSD who was not in combat. I spent 5 years out of the 7 years that I’ve had PTSD pretending to the world and lying to myself that I don’t have it and that it went away. My PTSD relapsed in August due to being triggered heavily, a month after my gastrointestinal issues began to take over my life so it wasn’t until this year that I started acknowledging my PTSD again. I remember on my 18th birthday that I felt afraid to go out and I was not able to celebrate my birthday, let alone anything for that matter. 7 years later, I never thought I would reflect back on a day that I never thought I would be reflecting on my 18th birthday and feeling as if not much has changed.
Disorganization and chaos are two common themes in my life, and I’d be lying if I were to say that PTSD wasn’t the reason behind it. I won’t go into detail about my struggle with PTSD because it still is a very personal subject for me, but I will admit that I miss the hyper productive person I used to be. Of course, I long for the day that I will be able to eat without pain and fear of diarrhea, but I long for days where I can work all day and accomplish goals even more. Looking back, it seems like that person is gone now and has been replaced with what is now the new me, with little direction and an unsure future. I have spent so many years fighting suicide ideation, which I’ve only had relief from for 7 months, that I didn’t think I would make it this far.
The reality of it is that I did make it this far, and the only thing I know how to do is rebuild. I don’t know where to go from here because I’ve had to change my direction with every obstacle life throws at me. Given all the confusion and change, it doesn’t come as a surprise that I feel so lost. I feel as if I’ve lost so many battles and continue to lose more battles every day, but I’ve definitely been able to adapt to everything life has thrown at me over time. Through all of the failures and trauma I’ve experienced, maybe I am a bit weathered, but I am definitely not the loser that the stigma from society combined with the monster that is depression tell me that I am.
Human beings are mammals and are naturally focused on survival. I’ve gained so many new skills as a result of just trying to survive. Until I sat down today and truly reflected, it never occurred to me how hard society is on individuals such as myself that live their daily lives with their survival skills compromised by these various chronic conditions. Living with debilitating chronic conditions, whether they are mental or physical, is different for everyone, but most of us have to know many different skills and do many different things just to make our every day lives work. According to The Invisible Disabilities Association, roughly 26 million Americans are living with a severe disability, but only 26% of these people use visible devices to help them with their disabilities. A lot of adults with debilitating chronic conditions work 9-5 jobs, but some, such as myself, choose to become entrepreneurs or do freelance work. Whether those of us that are living with debilitating chronic conditions work a 9-5 job or choose to earn money in a non-traditional way, we still strive to function in society and not let our disabilities control us. Living with debilitating conditions is a task of its own and it is different for each individual so while some people’s conditions may give them the opportunity to do what society defines as “strong” and “working through their struggles”, not all of us are capable of doing such. Just because I chose to be an entrepreneur, it doesn’t mean that I am less than someone else with a disability working a 9-5 job because circumstances vary on an individual basis. My point in presenting all of these numbers, facts, and anecdotes from my life is that you don’t have to be dealt the best cards to reshuffle the deck until you have a good hand.
With that being said, thank you to everyone who wished me happy birthday! I hope I am able to work to the best of my ability for the next 364 days to report from a better place in my life next year! All of the photos featured in this post were shot by my great friend Jeremy LaRue at Snap 151. Below are the rest! Thank you to those of you that read this post, and I wish you love and light! ~Kal