There are a lot of motherfuckers out there right now acting like they’re never going to get sick.
That shit needs to stop, because the Venn Diagram of people who aren’t currently sick and people who will be sick at some point in their lifetime is a fucking circle.
I get it, it’s information overload. Back in the day poor people who were also sick people quickly became dead people (hey, here’s a report showing that having money is super helpful for dealing with CF). Now with advancements in medical technology slowly creeping down the income brackets and the barriers for communication being blown wide fucking open, there are a lot more voices in the conversation and it’s getting harder to pretend that everyone has bootstraps by which to hoist themselves up. So it’s time to up the complaint threshold.
If you’re unfamiliar, the complaint threshold is set like this:
- A complaint is made. I’ll pull one from my personal file and go with “I can’t eat and I can’t breathe and I sometimes find it difficult to balance my medical needs with my financial obligations”.
- Some fucking complaint gate keeper will analyze the complaint and decide it’s not valid because “some people have it much worse”
- The complainer internalizes this message and learns to eat shit because “yeah, some people do have it much worse”.
- The wheel in the sky keeps on turning.
Used to be that all a person had to do was set the complaint threshold high enough so people would eventually convince themselves they weren’t getting fucked. This is still attempted today but for all cons of social media, one big plus is that we can all compare notes. So how are we going to ignore all the complaints now?
We need to convince everyone their sickness is a moral failure.
That way we can all feel better about ourselves when the sick become the dead because they had fucking iPhones. I know this is easy outrage bait, but let me seriously list 5 ways my smartphone (full disclosure, it’s an iPhone, but I don’t want to sound like an industry shill) has helped me with my medical issues:
- Instantly look up the carbs in my meal to figure out how much insulin I need to take.
- Set my schedule for time dependent medications (long acting insulin and Orkambi in particular).
- Provide instant access to my upcoming appointments, medication lists AND medical staff through an app supported by my hospital.
- Instantly look up drug interactions for any of the 13 prescriptions I’m currently enjoying.
However, it’s number 5 that I think is the problem here:
5. Provide easy access to a community of people with similar problems.
I’m not going to bullshit you here: I’m not much of a “group” guy. A lot of that is because when I was growing up, any CF support groups weren’t geared toward me. I’m a fucking misfit. But you know what happens when I put my stupid misfit thoughts out on the internet? I hear back from people like me. And people who aren’t like me. People who are nowhere fucking near me. It’s incredible. And unfortunately for the complaint threshold, we’ve been comparing notes.
Problems are not a limited fucking resource, there are plenty to go around. When I complained about the trials of getting insurance and how I felt Cystic Fibrosis limited my upward mobility both psychologically and physically, the subtext was not “so let’s stop doing research into the biomarkers of Huntington’s Disease.” I was fully aware that I had A problem not THE problem. Still, I was told time and time again that it could be worse, which–if you haven’t noticed–is not an actual solution. I had not hit the complaint threshold, so I went and got diabetes too. Still not there. You know what they’ll say when I die? “Well at least there’s no more pain.”
If someone tells you that “some people have it much worse”, there’s a good chance that your very existence has reminded them that some people have it much worse and threatened their internal narrative–the one that places them as Earth’s greatest champion. But next time someone tells you that “some people have it much worse”, ask them if they think that everyone that has it better than them worked harder to get it. They’ll probably lie and say “yes” just because they want to win the argument, but at least it will derail the conversation.
I have moments where I believe I am Earth’s Greatest Champion, but they are fleeting and outnumbered by the points in my life that I believed I was worth less because my drugs cost more than the average person. When I was 12, it was a funny anecdote that my pulmozyme was $1000 a month. But as I got older and that cost went up–currently the market value of my drugs is closer to $30,000 (five zeros, not a typo!) a month–the joke got old.
We need to make it easier for any person with any chronic illness to live to their full potential. Actually, let’s simplify that further: we need to make it easier for everyone to live. If we absolutely have to, we can make the economic argument and say that we have no idea what innovations, talent, or ideas we are missing out on because the next brilliant designer, writer, or physicist is busy scrambling to stay alive. But it’s currently possible to save a fuck ton of people from dying and we seem to be deciding that conquering nature was the easy part. The human made system of “who should get stuff and when” is apparently completely fucking impenetrable.
Let me shout this message into the void and hope it finds it’s way to some chronically ill people: do not let any motherfucker out there convince you that money is worth more than your life. They’ll call you entitled and yell at your iPhone. They’ll try to convince you that you’re selfish for wanting to breathe. They’ll start going on about bootstraps and how the apocalypse is coming so we’re all going to need to know how to make corn chowder out of two turds and a can of Shasta, but remember that–despite their best efforts and grandest wishes–we don’t live in the Wasteland yet.
And if none of the above applies to you now, I can guarantee it will in the future.