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Ask HN: How do you deal with chronic illness?

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Re: Ask HN: How do you deal with chronic illness?

#61

Post by pseudosavant »

spaceisballer wrote: post #34
heavyset_go wrote: post #25

Earlier quoted context omitted.

> I find that it's better to say as little as possible, you have the right to privacy after all. Your coworkers don't have to know the details of your life. I recommend not going into specifics about your condition if you choose to say anything at all about it. You will come across people who will have opinions about it, despite not having to live with it. Also, be aware that it is illegal for your workplace to pry a…

Totally agree, you do not have to let people know. I have an employee that told me about their condition and made requests to me that I was happy to oblige but I still told him to go to HR and make a reasonable accommodation request. Doesn’t matter if I’m going to be decent about this, you want it in writing and mandated.

I used to agree with this position but after the last 3 companies I've worked for I've learned the hard way to handle it differently.

You sound like a manager who actually cares and empathizes with your employee. I had a manager like you. It was amazing. But you aren't the norm.

Going to HR will generally only draw negative attention. There is no situation I've seen where someone needed HR and HR actually did anything meaningful to support them.

I prefer to deal with each manager differently. Getting it in your HR file means you lose control over who knows what, and how it was explained to them.

Re: Ask HN: How do you deal with chronic illness?

#62

Post by sjg007 »

49yearsold wrote: post #53

Diabetes - since my mid-30's - now am approaching 50. Have maxed out on all pills. Very soon will be put on insulin. Did lot of running for a decade or more. Diet control is my weak point and toughest to be disciplined about. Not that I gorge on sweets/candies - but rice, fried food is something I cannot do a clean breakup with. But as and when I can - do regular exercise (running) and diet control. Very difficult fo…

For your situation, is there a diet and exercise solution if you could do it?

Re: Ask HN: How do you deal with chronic illness?

#63

Post by elil17 »

juskrey wrote: post #60
49yearsold wrote: post #53

Diabetes - since my mid-30's - now am approaching 50. Have maxed out on all pills. Very soon will be put on insulin. Did lot of running for a decade or more. Diet control is my weak point and toughest to be disciplined about. Not that I gorge on sweets/candies - but rice, fried food is something I cannot do a clean breakup with. But as and when I can - do regular exercise (running) and diet control. Very difficult fo…

Fasting should help. A friend of mine reversed the process already in his 50s

I don't think they invited you to give them health advice.

Re: Ask HN: How do you deal with chronic illness?

#64

Post by marmaduke »

Karawebnetwork wrote: post #9

One day at a time. Since you cannot cure that illness, I recommend fixing everything in your life that you have control on and that might help you feel better. Sleep well, eat a good diet, skip fast-food and alcohol when possible, etc. This won't cure it (don't listen to people that say it will) but it will make your overall life better. This will make it so that when the chronic illness hits you, you're at a more st…

Illness or not, this is good advice for everyone. Each has their own challenge(s) whether they are of the diagnosable kind or just fatigue, anxiety etc.

Re: Ask HN: How do you deal with chronic illness?

#66

Post by devteambravo »

Not quite illness, but I'm still here, after surviving a 500Lbs SVBIED blast in Afghanistan. ~300 surgeries/10yrs later, I'm sitting here trying to become a product engineer while dealing what could be construed as hurdles:

-Massive insomnia. I try to meditate, read tech news and listen to Javascript lectures. I can't reliably schedule meetings in the morning due to sometimes not falling asleep until 6-7am. Hack your environment to remove blue light.

-Pain. Basically, my only available option is narcotics, which I refuse to take for obvious reasons. Meditation, acupuncture helps.

The stress comes from how others react to me. They don't see the behind the scenes, so I'm just some young, rather unprofessional-looking guy, making halfway attempts. I chose to ignore that completely, because at the end of the day, none of these people are helping the situation in any way.

It surely helps to have a never-ending will to go forward, on step at a time.

One piece of advice I would give is to focus on positive stuff. It's all too often very easy to find the negatives. Don't take the easy route.

Re: Ask HN: How do you deal with chronic illness?

#67

Post by paperwasp42 »

sickygnar wrote: post #59
paperwasp42 wrote: post #32

Been living with a rare neuromuscular disease since birth. Might kill me early, might not. I've learned to cope with it in hundreds of ways, just like people cope with their career in hundreds of ways, or their kids, or their marriage. It's a central faucet of my life. It's destructive as hell to shove it aside and try to "forget about" all the small, daily issues. So I've learned to co-exist with it by doing the fol…

> --Stay away from online "support groups" for chronic illness. 99% of them are toxic as hell, especially the "spoonie" community. Instead, seek out people who have chronic illness and are living the sort of life you want. Develop individual friendships with them, and learn from them. Totally. The more I think about the disease and difficulties, the unhappier I am. If I don't read that garbage the unhappiness and bit…

Oh, hey, fellow epileptic! Couldn't agree with your comment more. I've also found that diet has a huge impact, and I'm fascinated by research into the gut microbiome and the giant impact it has on the brain.

I also follow a low-carb diet, and I've found it helps a lot (even though it's a pain in the ass.)

Fasting doesn't work quite as well for me, since I already have low blood pressure and sugar. Any tips for building up a tolerance for fasting?

Re: Ask HN: How do you deal with chronic illness?

#68

Post by ilaksh »

Well since I have had problems my entire life, its usually not stressful in the way I would normally use that word. Like as in cortisol levels spiking from something unexpected or something.

But it does cause me problems. What has helped me a lot is working from home. I have been doing that mainly for like ten years or more. Not having to deal with the stress of commuting and possibly getting that much more sleep and having 1 or 2 hours of extra time, is a huge deal for me. Because the biggest symptoms with my health are fatigue and needing to go to the bathroom a lot from the IBS.

But you did use the word stress. I think that is the biggest adjustment I have made compared to most people. I have deliberately reduced a lot of the causes of stress that people normally have in life. I have a greatly reduced social life. Don't own a car. I actually moved to Mexico so that I would be able to easily save money.

But the weird thing is because I have always had asthma and acid reflux (which in my adult life has really been a significant breathing issue especially at night etc.), I suspect that most people often think I am just lazy or something. Especially since those are common problems and lots of times I can operate just fine for hours. I just usually look tired and sometimes need breaks to crash out for a couple of hours. But people don't see how tired I am because I don't go out much or go on video.

I was actually hesitating to say that I have those issues. Because a lot of times they end up being fairly minor for other people with good treatment. For me, in my adult life the acid reflux has been a big deal for breathing and waking up tired and my first surgery attempt so far was not successful.

But people generally don't cut me any slack for it. And with a flexible work-from-home schedule, I don't need to ask for slack.

Re: Ask HN: How do you deal with chronic illness?

#69

Post by cookiecaper »

pseudosavant wrote: post #61
spaceisballer wrote: post #34

Earlier quoted context omitted.

Totally agree, you do not have to let people know. I have an employee that told me about their condition and made requests to me that I was happy to oblige but I still told him to go to HR and make a reasonable accommodation request. Doesn’t matter if I’m going to be decent about this, you want it in writing and mandated.

I used to agree with this position but after the last 3 companies I've worked for I've learned the hard way to handle it differently. You sound like a manager who actually cares and empathizes with your employee. I had a manager like you. It was amazing. But you aren't the norm. Going to HR will generally only draw negative attention. There is no situation I've seen where someone needed HR and HR actually did anythin…

Partial agree here. HR can be useful but it depends on the company's culture and under good circumstances, it won't be needed. You want a place that will appreciate your contributions and appreciate the value of their long-term investment in people.

If it becomes apparent that $CURRENT_EMPLOYER is not such a place, it's time to start protecting yourself with things like formal disability accommodations through HR, etc. The problem is that once this becomes apparent, shrewd politicians will have already worked to make it look like your accommodations are just a cover-up. That's not necessarily a deal killer, as every company puts a different weight on the legal risk that HR exists to prevent, but it's not likely to ingratiate your manager, which makes things difficult.

The long and short of it is that it's folly to imagine that HR is in your corner. They are paid by the company and they exist to keep the company free from the mind-boggling expense of lawsuits. You can work this to your advantage sometimes.

Re: Ask HN: How do you deal with chronic illness?

#70

Post by syncbehind »

I guess I can provide an unusual perspective. I've lived with a chronic kidney illness since I was 14. Thankfully my illness does not manifest outwards and I am able to hide symptoms quite well. Even when my kidneys failed, I was able to schedule my life around my dialysis appointments.

One of the biggest things that I notice shift as I grow older is that I no longer package my illness and my life separately. I think there's a tendency to treat chronic illnesses as acute and only focus on them when severe symptoms arise. As others have mentioned, that almost always leads to burnout. I regularly packaged my illness when I was in undergrad (worked full-time, went to school full-time, and then spent the remaining hours either sleeping or on dialysis); do not do this.

I don't think you can really completely remove the stress but eventually it stops becoming the highlight. It's almost like tinnitus, it's there all the time but there are large swathes of times when you successfully ignore it.

Your world gets a bit smaller. You just don't have the mental energy/ability to engage the same number of people/events. My social life definitely shrunk when I was on dialysis. It opened a bit more once I got a transplant, but not terribly. You still have a lot of concerns because after transplant, you're immunocompromised for the life of the kidney. Going to events becomes very stressful because of the risk to your health (Covid is a nightmare).

At the end of the day, you have to REALLY pick what you do with your time. It's like you're a cellphone with a broken battery that only charges up to 30%; you can still do all the things you used to, you just run out of juice a lot quicker.

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