Here’s What My Chronic Illness Costs Me, Even Though No One Can Tell I Have It
As a UK resident, I can say this: God bless the National Health Service. After eight years of illness, four chronic diagnoses, and more blood draws that you can count, my out of pocket expenses for access to healthcare have been zero. To my friends across the Atlantic, I know how blessed I am to be able to write that.
However, I have not been blessed with winning the genetic lottery. From my teenage years, it became pretty apparent that something wasn’t quite right with my health. My weekends were spent entirely sleeping, I didn’t need to drink to feel hungover, and I envied my friends for having the physical ability to make plans on consecutive nights. Working out on a Saturday morning felt foreign, and so began an 8-year journey of chronic illness investigation that culminated in the diagnosis of Myalgic Encephalomyelitis (ME) in the summer of 2019. ME is also known as “Chronic Fatigue Syndrome” in many parts of the world, and is generally best known for its namesake; crippling fatigue that never improves, no matter how much rest you get. In addition to that, I experience sleep problems, joint pain, dizziness and confusion on an almost daily basis. This medley of symptoms isn’t visible, although their severity and constant nature have greatly affected my ability to have a normal life.
In an effort to manage my symptoms as best as possible, I began a new medication and a physical therapy plan, all the while trying to maintain the illusion that I was a normal 23-year-old. I continued in my full time, career-focused job, signed up for online dating websites, and came up with excuses to avoid seeing friends.
The weight of knowing that I was facing a life with illnesses that wouldn’t go away but also wouldn’t kill me — just leave me sick forever — was a hard pill to swallow. So I threw myself into self-care, self-love, and building the best routine I could to give me an “as normal as possible” 20-something lifestyle without sacrificing my health.
Six months down the line, I’m in a much better place physically and mentally, thanks to the routine I’ve put in place, but this hasn’t come without a cost. While my healthcare access and appointments are all free, a number of the treatments and tools I require are costs I’ve had to absorb in my not-so-big budget as a recent graduate.
Health-related travel expenses: £3,500 / $4550
I am blessed to live in a beautiful part of the country, wedged between scenic mountains on one side and the picture-perfect UK coastline on the other. This view, however, does not come without a cost and unfortunately, that cost is a severe lack of public transport.
While the majority of my healthcare appointments are arranged locally, my most recent and more complex diagnosis has required me to travel further afield to access specialist services I require. Without the option of traveling via public transport, I simply wouldn’t have been able to travel back and forth without access to my own vehicle. As such, one of the biggest expenses in my budget this year has been the purchase of a small but reliable vehicle to get me from Point A to Point B, and the running costs associated with this.
Private prescription costs £300 / $389
While my life-saving medications are, thankfully, covered by the National Healthcare Service (NHS), I also have a private prescription for an additional medication that helps manage a prominent symptom of my chronic illness. The drug is new and experimental, which is why it isn’t yet available through the NHS. While this may change in the future if its use becomes more mainstream, at the moment, I pay roughly £25 a month ($32.50) for access to this treatment.
Counseling: £250 / $325
In an effort to look after my mental health as I care for my physical health, I decided to reach out to a counselor for a six-week block of sessions. My goal was primarily to discuss coping mechanisms for my newer illnesses and figure out how to manage the symptoms and communicate them in a career setting at such a young age.
At £45 a session ($58.50), this added up to £250+ ($325) for the course and was by far one of the best value-for-money experiences I received throughout the year. Following the counseling, I had a refreshed energy for articulating my needs regarding my illnesses. I now have tools to manage the mental exhaustion that comes with chronic illness and have been able to champion accessibility and invisible disability initiatives in the local community.
Gym with thermal suite access: £480 / $624
Physically, living with chronic illnesses can be a huge challenge. With one of the biggest symptoms being severe fatigue, my body’s capacity simply isn’t there to complete a challenging leg or ab-based workout in a gym. Instead, my physician recommended low-impact cardiovascular exercise, which is best carried out in a swimming pool.
Unfortunately, my options for gyms with pools are fairly limited with the closest being a three-mile drive. In addition to using the pool to work out in, using the thermal suite for sauna therapy has massively improved symptoms. It’s something I use three times a week without fail to help manage my illnesses, and doesn’t hurt that I get a to complete a short meditation while the heat takes care of my body!
The total cost of all of this is about £4,550 ( $5914). Overall, my health-related expenses add up to just under 25% of my annual take-home salary – a massive proportion of the monthly budget.
While it would be easy to begrudge paying this, I’m incredibly thankful to be in a position where I’m healthy enough to work in a career I love, for an employer that supports me and one that affords me a salary that comfortably covers these expenses, with a little entertainment money left on the side!
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