Wednesday, January 17, 2018

Managing Chronic Illness: 01 - Chronic Illness Sucks

For the next six weeks we're doing something a little different. We're talking about chronic illness, its impacts and how best to manage those impacts and still get shit done. If you are chronically ill and a writer, this can be applied to writing and if you are not chronically ill, but write, these posts could help give you a raw insight into chronic illness, so hopefully there is still something for everyone. And by 'everyone' I mean 'the handful of people who regularly read my blog'.

This is, however, going to be an HONEST look at chronic illness. Be sure you are mentally equipped to handle that before reading further.

Running order is going to be something like this:
1. Introduction to how shitty life is with chronic illness. (AKA, the post you are reading now.)
2. Food and fluids. (Also poop.)
3. Sleep and lifestyle aids.
4. Medication and exercise.
5. Socialisation, time management and goal setting.
6. Dealing with medical professionals without killing them or yourself.

Firstly, let me say, I am not a doctor. Which is, generally speaking, a good thing, as anyone with a chronic illness can tell you most doctors are not only assholes, but dangerously and criminally incompetent when it comes to chronic illness.

THAT SAID, if any of my advice contradicts your doctor's advice, don't be a moron and try and sue me when you go off your medication cold turkey and suffer heart failure. All advice I am giving is general, and as such should not be applied to any individual circumstances without considering a holistic overview of your situation.

On the other hand, if your doctor hasn't talked to you about all this stuff, they're a shit doctor. Find a better one.

So being chronically ill sucks. There is a huge and varied list of the way it sucks and there are literally no pros, except that you get to spend more time with your pets. Here is a list of some of the sucky parts. I'm write this list so 1) healthy people can get some perspective and 2) chronically ill people can see they are not alone.

Sucky things:
1. Its often embarrassing. Sometimes for dozens of reasons, like frequent vomiting, diarrhea, falling over, diapers, relying on other people for things four-year olds can do, weird skin things, bad smells, brain fog that makes you say dumb shit. Chronically ill people spent a lot of time completely humiliated and it wears on our self-esteem.

2. You're always tired and thinking is hard.

3. You're always in pain. Constant pain causes a whole range of psychologically detrimental effects, like loss of empathy, confusion, exhaustion, lowered self-control (or in my case, no self-control at all), mood swings, depression and so on. You are literally being tortured, 24-7 for years at a time, and are expected to go on living your life. Which is not reasonable, but people act like it is in a kind of sadistic, society wide gas-lighting.

4. Socialising is hard. Because of all the things I already mentioned, as well as mobility issues that just make socialising impractical and a huge waste of precious resources.

5. Which goes hand in hand with: you're usually lonely.

6. You're on tons of shitty meds that you don't want to take, but need to stay alive and even partially functional. But you're not really functional. Your life sucks and its always horrible and you still have to take 30+ meds a day or it would be worse.

7. People give you shit for those meds. In fact, people give you shit for all kinds of things. And even if they aren't giving you shit, you're imagining them giving you shit. And you find yourself being grateful for people who show basic human decency, and you spend your time with friends thanking them for walking slowly, and other dumb, dehumanising shit like that.                                                             

8. Sometimes when chronically ill people die, other people are relieved, and you realise that when you die, there are people around you who will say shit like: "At least she's not suffering anymore." And you'll be dead, so you can't punch them in the mouth. People also make movies like 'Me Before You' (2016), romanticising the idea that the best thing you can do for loved ones is DIE so you aren't a huge burden on them.

9. Being chronically ill is heinously expensive, but you're chronically ill, so you can't work. Which means you almost never have the money for the things that would make your life more tolerable.

Now, if you read back over that list, you will realise that most of the things that suck about chronic illness, would suck a lot less if we were not living in a dystopian hell and the general population were capable of empathy and human decency. But we are, and they aren't, so we need to work with what we're given.

The only way to live like a human being AND be chronically ill, is to arm yourself appropriately.

Some chronically ill people are lucky enough to have diagnoses. Some aren't. Either way, this applies to both. You need to learn everything you can.

If your disease has a name, dedicate yourself to becoming the world's foremost expert on the subject. Learn biology. Read the scientific papers until you understand them. Read forums. Read books. Go to—or watch videos of—conferences. Know the names of all the leading experts in the research field. Email them and ask them to put you on any email blasts on the topic. Do NOT bother them for advice or talk about your personal circumstances, you want information from them, not help. Never stop researching and learning.

If you don't have a diagnosis, you're going to do the same, but instead of researching a disease, you're going to research symptoms and talk to other people with the same symptoms. You're going to learn everything you can about potential diseases and get tested when you can.

Doctors have come to the conclusion that while I HAVE an illness and there are clear markers of it in tests, the disease has no name and has not yet been identified. So, I am pioneering my own treatment. I had a friend with fatigue who started to get better, he was using an approved drug for an off-label use. I did too. It worked for me. As new meds come out that might possibly treat my symptoms, I try them. I try everything.

EVERYTHING, even if I know its dumb and it won't work. Crystals? Tried em. Acupuncture? Meditation? Weird diets? Faith healing? Fasting? Doesn't matter what it is, if I have heard of it, I have tried it. I have had cameras in every orifice. I have had needles in my spine, my arms, my ass. Nearly every part of me has been biopsied.

I periodically (and don't do this at home, kids), stop taking my meds and change the combinations to see if I can take less, or to check what symptoms they are causing rather than preventing. I push my doctors to get me on trials, I bring them research, I present hypothesis and the results of my experiments on myself.

Its hard, and its horrible, and it often makes things worse. Two days of trials can take two months to recover from. But each time I learn something new, I refine my diagnosis, and I edge a little bit closer to health. I am clawing back my productivity, a few extra minutes a day at a time.

The hard truth is, no one else is going to fight for you. You have to do this yourself. Its going to take years and years, but there is a slim chance, it will be worth it in the long run. So you have to hold on to that slim chance. Don't ever give up on it.

And to help you with that, the next five posts are going to be about how best to combat all those shitty things, so you can scrape enough of yourself together to start digging up.


  1. I love you Jake. This is so good and I can't wait to read the rest. It's always astonishing how incompetent doctors are. People are, unfortunately, unique.

    1. Yes, doctors can be very frustrating. My last post in this series will be on how to talk to doctors and what to say to get better results and treatment.