I Can't Afford To Stay Alive With Cystic Fibrosis
… I have to tell you the sad part first.
TRUTH:
I have been extra MIA because I have had a ROUGH couple of health weeks.
I mean rough.
This weekend has been terrible (not contagious. Just super super super down and out and hard to be on my phone), and I wrote about some of it last week while asking your opinion on scheduling, writing, and 1 year celebratory Substack-aversaries.
Upside? I’m really proud I haven’t missed any work and can hide all the poorly things except for little secret stories like this. But…
…. Downside?
I’m still so terribly behind on DMs, saying hi to dear friends and… well, pain.
Just like plain and simple pure pain.
Below, please find the first of a Two-Part, unedited longer piece that was published in partial on CF News Today.
Here, you can read the entire stream O’ (share nowhere else)- in one archived spot.
(Though still read it there please because editing sometimes makes things take on new meaning? We all need the chance to give our lives a second look, again and again)
Tomorrow, I’ll share the second part that hasn’t been shared anywhere else (and is rather vulnerable so…. eek)
See you then?
xo
B
QUESTION FOR YOU:
When you start to wonder “how do I keep doing this”, what helps you keep going?
It is extremely expensive to have Cystic Fibrosis.
It is extremely expensive to have any chronic illness. It is extremely expensive to be sick… but lately, I am beginning to wonder if the system has been accidentally rigged against those who are ill, no matter what we do.
What is “the system”, you ask? I feel like many of us dealing with ongoing or progressive sickness use these two words more than we realize.
Society, stigma and the proverbial “red tape” have all aligned accidentally to make healthcare feel an impossible bog to wade through unless you have personal resources before you’ve even begun.
I am of course speaking about my experiences as someone with (atypical) Cystic Fibrosis in the United States in this case, but I am sure there are many all around the world who feel trapped in their personal Systems too.
In my opinion, I think there is a caste chasm in healthcare that cannot be surmounted, unless you’re given a hand up. Unless, for example, you are lucky enough to be born into a family with personal savings in the bank, or with assets to sell if the bills tally too high, or with health insurance readily available.
I know that many of my friends have been able to work their bums off to climb past the ladder rung they were born into, and achieve higher academic success, or earn a raise in their field. So I am not saying that hard work doesn’t matter. The sacrifices that many people make to provide for their families and themselves can be exorbitant. Sometimes (as in the case of a military or police officer), it can even cost someone’s life.
Yet, in an attempt to help more understand how much The System isolates those that are sick, think about this:
If I wanted to join the military so that I might be able to retire one day, have housing provided, earn my degree without soul crushing loans, and so forth (despite the devotion and risk it takes to do so), I cannot. Even though a life of service is far too underappreciated in this world, a sick person doesn’t even have the choice of giving that sacrifice.
There are many people with progressive illness blazing a path in their professions, proving that it can be done. But for those with frequent hospitalizations or operations, “higher earning” jobs grow out of the question (government, a surgeon who stands on their feet all day, a lawyer who studies in the wee hours of the night). Even if they give all they have, many people cannot climb higher in The System to create a better financial situation for themselves.
I was lucky to be born into a family who did provide. But even when a person has a community they could ask for help or a loan, most people with sickness know they’ll never be able to work enough to pay that loan back, so, ethically… they stop asking.
Additionally, I believe our world is no longer built for one-income households. Unless the working partner is already at a certain caste, a singular income is not enough to sustain most families (those also sustaining the life of a sick person, that is) when one partner cannot maintain a steady wage.
I write this because I want to raise awareness of how expensive it can be to keep someone alive, and how many hoops are in the way of finding our way sometimes.
I believe there is a middle area in The System that sometimes hurts sick people the most, though it’s difficult to label. The middle area means that someone might work hard enough to outgrow governmental aid, yet then find themselves spending so much on travel to clinics, paying for cafeteria food for their child, or co-pays, that they ironically would eat more produce and have safer housing if they still had assistance.
Living with an ongoing illness means those bills never stop. Unexpected expenses and terrifying life-and-death interruptions are going to keep happening, which means that savings can’t keep saving. Even the time it takes to apply for grants should be more readily recognized. And, most charities and resources are not fast acting. They’re like winning Willy Wonka’s golden ticket. Thus, saying “Can you apply for grants?” won’t immediately help someone whose water has been turned off and it’s 17 degrees outside.
The amount of work it takes for most sick people to keep doing is equivalent to a full shift… except we (at best) are paid $600 or so per month if we have disability benefits.
Some people will never be able to climb “a rung higher” in The System.
Sometimes, it’s not how hard you work…
It’s just whether or not you drew the golden ticket.
I give away “yearly free subscriptions” all the time- the second anyone asks (I otherwise don’t know to do so, so that simply helps me input their email)-
So if YOU ever need one or know someone who would, just shoot me their email and consider it done!
Supportive Word Nerds make THAT “policy” (terrible business model) of charitable giving- always and onwards- completely possible by encouraging this work.
THANK YOU!
… Share with you someone, if you like?
Not accidentally… systematically, deliberately. ♥️