Incurable diseases, privileged healthy people and painful advice

About incurable diseases, privileged healthy people and painful advice

The past couple of days, weeks even, haven’t been easy on me. My asthma got noticeably worse after an infection, breathing has become hard, I’m constantly coughing and I’m at a point where I’m starting to lose my voice. My doctor has upped my medication, prescribed new medication and done plenty of blood tests to look for other causes, but things aren’t getting better. I know where this is going, as I’ve been here before.

Either they discover some other disease is causing symptoms similar to my regular asthma symptoms and things hopefully get better, or they decide my asthma is indeed getting progressively worse and I get placed on an even heavier medication, which will require (bi-)weekly hospital visits and thousands of dollars worth of injections. It scares me, it saddens me, and it angers me.

I’m chronically ill. That means I’m ill now and will be ill forever unless a cure is found.

I’m jealous of the people who are born with a healthy set of lungs, I really envy them. If there was some kind of magical button that would reset my entire life and give me the chance to start over with a healthier body, I’d gladly push it, even if it meant losing everything I have now.

But such button doesn’t exist, and neither does any cure for my asthma. I can use inhalers, I’m using three different ones at this point, oral medication, injections, or other forms of medication. But they don’t do anything else besides controlling the disease, reducing the symptoms, making life manageable. I’m glad those medications exist, and I’m incredibly grateful I have access to all of them, and even can get them for free. It makes living with a chronic disease much more manageable and way less stressful.

But don’t take that as a sign things are great. Things are better than what they could potentially be if I lived somewhere else, or was born a couple of decades ago or had another disease, and I have hope that a cure will be found within my lifetime. But everything could be much, much better as well. I could be healthy, for example, or healthier at least. I could be one of those people I now look at with pure jealousy and anger. Jealousy because of their health – anger because of their ignorance.

Unsolicited advice from healthy people is often wrong, painful or stigmatizing.

Honestly, I lost track of the amount of healthy people who have told me that my illness is just an excuse for being out of shape, that I should just exercise more or that their cousin’s best friend’s sister her boyfriend cured his asthma by drinking his own pee. Or people who don’t take the disease that seriously at all, and have told me to ‘just keep running’ even though I was having an attack in front of them.

And I’ve had fellow vegans tell me I should cut out meat and dairy (going vegetarian/vegan didn’t cure shit), or that I should try kale smoothies. I’ve read articles written by healthy men who claim asthma medication doesn’t work, the pharmaceutical industry is just trying to screw us, and turmeric will not only cure my asthma but also my dead grandma’s incurable cancer.

It makes me angry. I wish all it took for me to be cured was putting turmeric powder on my food or drinking a glass of kale juice in the morning. How beautiful, and how different, would my life be if that was the case? It’s dangerous because in times of desperation that little glimpse of hope becomes so seductive. You’re hoping the healthy white guy writing about the evil pharmaceutical industry is right, and that buying his turmeric pills will make everything better.

Such health advice can even be dangerous.

It would be convenient, right? If everything was a conspiracy and all it took to be cured forever was to try his alternative medicine for a couple of weeks and ditch the inhalers that taste bad and increase your heart rate? Wouldn’t it be great, if getting a foot massage or drinking kale juice or exercising more or even prayer would cure me of this crap?

It sounds beautiful, and it makes me angry. Not only because I know some people, desperate for a cure for whatever it is they’re suffering from, will believe them and possibly end up even sicker, or dead, because of them. But also because they’re healthy, and they make getting healthy seem so easy, they make my disease seem less dangerous than it is and they make me feel even more desperate.

Everyone who tells me kale juice, turmeric, veganism or a foot massage will cure my asthma, they all seem so privileged. If the worst disease they’ve ever experienced could get cured with a glass of kale juice in the morning, it probably wasn’t that bad. They’re healthy, and I wish I was too. Or they get sick with a curable form of cancer and decide to blow their chances of survival by using the power of crystals, while my grandma’s cancer didn’t have a cure. Those people don’t know pain, yet they’re looking to profit from the pain of others.

Intentions vs. consequences.

Lots of the people who gave me this type of advice did it with the best intentions, at least that’s what I hope. They read something somewhere, which they probably even just vaguely remember, and they want to be helpful so they inform me about it. But they don’t think about what effect their words will have on me, they don’t think about the consequences of their good intentions.

They don’t think of desperation I’ve felt about my disease, the nights I woke up being suffocated by my own body, the hours of work and school I’ve missed trying to control this disease and the pain that comes with all of it. Telling me to just drink some kale juice ignores all of that, and shows me how healthy you are, and only makes me wish even more that I was born in another body. An apple a day doesn’t keep the doctor away, at least not for those of us who aren’t healthy and able-bodied. It hurts, and all I have to say to them at this point is that they can fuck off with their kale juices, turmeric pills, exercise and healing crystals.

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2 Comments

  1. I can really empathise with feeling angry about this. I have a heart condition which was triggered after a very physically difficult labour – I’ve had surgery but it failed and I have to live with this condition – I was fit and healthy before and now I find it hard to exercise and episodes can happen at anytime which are very scary and it makes me anxious about doing things I normally wouldn’t of thought about before. Its hard knowing one has to live with this things forever. I do hope your symptoms improve and they don’t find something new x

  2. I guess it all comes down to intentions, but I hate how such intentions are used as the end-all, be-all of why people put their noses right up into my business. A few things people are always commenting on for me: allergies, chronic fatigue, and irritable bowel syndrome (IBS). I’ve gotten to know my body fairly well, but that doesn’t mean there won’t be surprises. I can have certain foods occasionally, but some I can’t even have “a little” of—my grandmother is always telling me I could have some crumbs of nuts, but ’twas a speck of a pecan or walnut or something in a banana muffin she’d thought she’d made nut-free specifically for me that resulted in an inability to breathe.

    And my cousin, who’s seven months younger than me, is a self-proclaimed nutritionist expert selling an MLM diet fad and acting like it’s this Super-Duper Magic Cure or whatever for all that ails you.

    Unlike you, though, I find myself more stubborn than ever—no matter how I actually feel, I put up this front of, like, “My asthma is just fine; I don’t need your help,” because that’s how angry I get with them. They say they’re “just trying to help” and “just worried” about me, but it feels too much like an excuse, because all it does is more harm than good, and it pisses me off in the end. Each person is different; there’s no actual “average” that works for ever single person in the world, because we’re all so different. If someone’s allergy went away because they ate a little of it, maybe they weren’t diagnosed with it in the last two years after an anaphylaxis episode so horribly they can’t be tested for it officially without too much risk.

    UGH, people suck. 😫