“You may never know what results come of your action, but if you do nothing there will be no result.”
We have just graduated and entered the hierarchy of adulthood. Freedom has been redefined for our lives, unlike the freedom of college speckled with exams and class time. Now freedom means – living on our own, paying our own bills, making adult decisions (that have actual consequences), and falling in and out of love and friendship at whatever speed we want. We have become grown-ups – we are complicated people. We are millennials.
We are single, independent and fearless in our self-fulfilling prophecies and self-absorbed ways. We are the largest and smartest generation. We are crushed with student loan debt, living off canned beans and the occasional, self-indulgent $9 burrito from the taco shop down the street. We are finding our way in an evolving work force, with scarce job opportunities and the harrowing idea that pensions and 401ks may not (will not) exist in our futures.
We also now have multiple sclerosis.
The future that we planned begins to dissolve around the intangible idea that we now don’t know what our future will look like. Everything changes, just when things are beginning to take off. We worked years to be here, in this apartment, with this job and with the road outstretched before us with many destinations in mind, and with the student loan debt to prove it. Now we don’t know what to think and planning seems like the worst conceivable thing to do ever.
What does this mean for us? Most of us eat alone, crawl into bed alone, binge watch Netflix alone and support ourselves alone. Our single-dom is rapidly increasing. In a survey of 18-29 year olds, 64% reported being single in 2014, up 12% from 2004.
And what does a person living with MS need the most? Support.
When I make a decision about my healthcare, my inclusion/exclusion criteria is one item only– will this help me? Will it keep me thriving? Financial cost or burden doesn’t even enter my equation until the insurance statements that turn into bills are piled by my front door. Pretty risky when I live solely on my own health insurance, and, because I am stingy with my paycheck (or rather, Sallie Mae is stingy with my paycheck), have foregone the added costs of long-term disability and HFSA and opted for the middle of the road deductible plan. As long as I can still afford my canned beans.
To put it bluntly – the days of the single-income household are long gone. For a family to thrive, it requires two incomes, at minimum. Where does that leave the single, young persons living with MS? Now, more than ever, it is essential to our survival to remain in the workforce. The average cost of living with MS per person, per year is estimated at $70,000. The average number of years that people leave the workforce after a diagnosis of multiple sclerosis is 10 years. The median household income is around $51,000. I’m no mathematician, but that does not add up. Not even close.
Onset diagnosis age is our 20’s and 30’s. Just when we are figuring everything out and finally learning how to get the most back from our taxes every April, and how to juggle happy hour and working out at 6am the next day to burn off that burrito. Just when we are falling in love and planning a life with someone – we are slammed with words and phrases like “no cure, coinsurance, deductible, disability, it will progress and disease-modifying drugs.” It’s enough to make your head spin and you had just hit the ground running, slowing to a nice jog and enjoying the scenery of the kingdom of adulthood.
So we sit alone with our decisions. What drug do I take? How do I inject myself? This one doesn’t have enough research behind it. I’m too tired to move, but I haven’t seen my friends in weeks. How will I afford these copays? Do I tell my boss? I just got this job. I’m too young to feel this tired. How will I go to work and sit 4 hours every week for my infusions? We were literally invincible two months ago.
But even if we are alone, balancing our checkbook and calculating the importance of groceries over paying our copays this month, we are never without support. We are never truly alone. Our teammates are wearing orange and bustling about at the National MS Society.
Despite the uphill battle we millennials are facing, we have one remarkable thing that many of those who came before us did not have – we have h o p e. And hope, my friends, I’ve learned, is the most powerful thing once you let it in and allow it time to do it’s magic.
Research is exploding. The onset of my first symptom led to a diagnosis of CIS, Clinically Isolated Syndrome; we watch, we wait – we don’t treat. Just two years later (two years!) – a diagnosis of CIS immediately results in a person starting a disease-modifying drug. We are advancing, we are making strides – we are closer than ever.
There are thirteen available disease-modifying drugs for relapsing-remitting multiple sclerosis, and more on the way – drugs that will be aimed at repair and not just reducing the number of relapses. The first drug ever for progressive MS is now FDA approved. Giving people who had no hope a sense of possibility.
We have more people in our corner than you could ever imagine. They are only a phone call away, and they will help. Our teammates at the NMSS help us navigate our insurance when it sucks and denies us coverage, help us get an air conditioner for those blistering summer days, help us connect with other young folks who are feeling exactly like us. They advocate for us and fight every single day for us.
Millennials are often labeled as lazy, entitled, self-absorbed and devoid of a work ethic. I’ve found this to be the opposite. Research has shown that employers must go beyond productivity demands to satisfy millennials. We don’t care about the how – we care about the why. We want a cause, we want a reason to do the work, and most importantly we want results.
The result millennials who are living with MS want? A cure.
All roads leading that direction are paved with advocacy, volunteering, getting involved, connecting and raising awareness. The MS Society will do more than their share of the work, but we have to put in the time, too.
We have the heart, I know we have the work ethic, and though we may not have the time or money, we more than anyone need to inspire hope – in others who can lend a helping hand, in those less fortunate, and most importantly, in each other. We may be alone in our 1-bedroom apartments, but together we are stronger. Together we will turn our hope into actions and turn our actions into results. We just have to come together and do it.
MS kills connection. Connection kills MS.