It’s the start of the New Year – The first chapter. A clean slate. A new page. A blank canvas. A fresh start. It goes by many names and is celebrated with promises made for the days that lie ahead. Commitments to break bad habits, plans to master a new skill or setting ambitious career goals, the start of the year stirs up excitement and a sense of purpose for many. But when you live with a complex medical condition or disability, the only thing certain about your future is uncertainty, and this time of year tends to carry less exciting prospects and emotions. The opportunities offered by the New Year that empower and enlighten so many people can instead plant seeds of fear, anxiety and hopelessness.
How can you get excited about the future when you’re chained to the present by insurmountable pain or grief? How can you be hopeful for the next year when you feel like you won’t make it through the next week? How do you move forward when you are still mourning the life you left behind when you received an earth-shattering diagnosis? These feelings are common among people living with chronic illnesses and are further amplified this year by the realization that it’s not just a new year, but a new decade.
I have not been immune from these thoughts myself, turning them over in my head as I approach the seventh anniversary of my life in the realm of illness and disability. I think back on who I was and what my life looked like a decade ago, and it’s terrifying because I can hardly recognize myself. I was 14, a Freshman in high school and blissfully unaware of how much my world would change in just a few short years. I was already excited about college, determined to pursue a degree in Equine Science at Delaware Valley College, a school I had grown up visiting and admiring. I spent every minute I wasn’t in school or doing homework at a local barn, mucking stalls and feeding horses in exchange for riding lessons. I often wonder where I would be if I hadn’t gotten sick, an excruciating question that I find myself stuck on more frequently amidst the excitement of the New Year.
Even if you can haul yourself through all of the existential dread and emotional baggage that accompany the start of the year, bigger problems lie in wait. In the United States, the start of the new year means pushing the reset button on your health insurance policy, and for people with complex medical needs this is often far more alarming. This means on top of paying your insurance premium (the amount you pay monthly or annually “subscribe” to an insurance plan), your deductible (the amount you must pay out of pocket for any medical expenses before you’re allowed to use that insurance) is set back to zero.
For anyone not in the US, you’re hearing that right. The dizzying reality is that even though you pay for an insurance policy at an average monthly rate of $1,563 for family plans1, you are required to pay for a certain amount of medical expenses out of pocket before you can actually use said policy. The coverage, premiums and deductibles vary wildly among insurance providers, but you could be looking at paying several thousand dollars for prescriptions, doctor’s appointments and medical testing out of pocket. Of the many issues present in the US healthcare system, this one represents a significant barrier in access to healthcare at the start of the year for disabled and able-bodied people alike.
As 2020 begins, I have a lot of reservations and a lot of fears. The last nine months have been painful ones, and I am entering this year still reeling from the challenges they have thrown at me. My physical health, mental health and academic career have all taken hits and made for a lot of uncertainty and hesitation in approaching the next year. I have been really lucky that my health has been relatively stable in the last two years, when comparatively, I was in a constant state of decline for the first five years I was sick. In the last few months I have seen the return of or worsening of symptoms that have been controlled for so long, and it’s been both distressing and disheartening. I am scared most by the complete lack of control, understanding that no matter what I do, I can’t stop this from happening. I am trapped in a cycle of fear, wondering if pursuing a PhD or continuing on a scientific career path will even be possible, if I will regress back to being house or bed bound and hospitalized on a monthly basis, and how much more mobility or independence I may lose. During this time, I’ve stepped away from social media and clearly, since my last post was in March, from blogging to try to get myself back on level ground. I didn’t expect it to be for so long, but a stressful semester of applying for PhD programs and fellowships only magnified my fears and uncertainties for the future.
Winter break was a desperately needed time to separate myself from everything for a bit. I didn’t get nearly as much done as I had hoped to and I am in a perpetual state of feeling behind on my work, but truthfully, I had to step away from everything school related for the sake of my mental and physical health. As the new semester begins, I am still full of doubts, I am still anxious, I am still tired, and I am still searching for answers to the questions shrouding my future. But I am also trying to find resolve in the form of three small resolutions. I haven’t made New Year’s resolutions since before I got sick because the things I planned or hoped for all seemed to disintegrate in the face of my failing health. They are small and personal, fitting within what seems realistic for where I stand right now.
As this post can attest, I am really trying to stick to the first – to write more. I have a master’s thesis to write this semester, but these posts serve as an outlet for things I am passionate about and things I want to share with the world. My goal is two posts per month, but at this point I would be happy with one. My second resolution is to read more – and not just research articles. I devoured books when I was younger, staying up half the night or sneaking away from events to find a quiet corner to read in. In undergrad, and now subsequently in grad school I never feel like I have the time to read for fun, or when I do, I feel bad that I’m not reading research papers. But I have 300 unread books sitting in my apartment (no joke) and I’ve decided I need this release back in my life. Finally, and perhaps most importantly, I am trying to be more kind to myself. I find myself living with constant guilt about taking time to rest or having days when I’m too sick to work, and it is utterly exhausting. So if you are living amidst the fear, the uncertainty, and the reservations that can follow the New Year, as 2020 begins, resolve to be kind and gentle not just to others, but to yourself.
- Emanuel EJ. The Real Cost of the US Health Care System. 2018;319(10):983–985. doi:10.1001/jama.2018.1151