Ask HN: How do you deal with chronic illness? • Hacker News Board

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

#101

Post by throwthrow_away » Mon, Oct 19, 2020, 6:58 PM UTC

First of all, getting hit by chronic disease in my late 20s was not something I ever imagined. I guess nobody does. I can give some details, since it's a throw-away account: I caught a severe bacterial infection, required prolonged antibiotics treatment which caused organ damage. Catching the disease was a low-probability event, getting organ damage, too. In retrospect I realise how lucky I was that the disease was caught early on and treated. I would have been dead otherwise.

As for living with the illness. You need to find a doctor that you can work with. There will be tough times and you need someone you can trust and reach 24/7 when things go south (which they do from time to time in my case). Also, without counselling I wouldn't be here today. Your career is impacted, your family life is impacted, your sex life is impacted. I needed someone to talk to and that someone had to be outside my social circle. I had 3 sessions per week for the first months, now I go once a week. It helps.

Also, people will get upset for different reasons. Your friends, family co-workers etc. Counselling helps, but most of the time it's still hard to tolerate and accept the pain and the anger. Most of the time I'm managing their expectations, not mine.

Some people mentioned good diet, sleep, no alcohol. This is the absolute baseline. If you have serious chronic disease, you cannot afford any of these luxuries. For every mistake you make, you and someone else will have to compensate. Discipline is key.

That being said, I still have a very fulfilling life. I go on vacations, see my friends (or rather most of the time they come over and visit), have some form of a career, have a loving partner and we're planning on having children. Life is good even if it's not like I imagined it 5 years ago.

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

#102

Post by proactivesvcs » Mon, Oct 19, 2020, 6:59 PM UTC

Listen to my doctor, treat my medication regime seriously and with respect, and respond to warning signs promptly. It feels completely normal to ensure I have medication with me at all times, despite the fact there's an outside chance I could die if I forget. That being said I am generally a laid-back person, which is probably why I don't fret about it.

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

#103

Post by blamestross » Mon, Oct 19, 2020, 7:00 PM UTC

neurouch wrote: post #35

I've had a chronic headaches for over 20 years. Actually just one big long two-decade headache, it's never gone away and nothing, including painkillers, really helps. Three things that I do to deal with this: - ignore: most of the time it's not top of mind; I can feel it always but don't think about it always. - keep up some hope: every few years, I go through the usual rounds with my GP and other specialists to see…

It probably won't help you diagnose yourself but my 8 year long migraine was PSVT and having a very unstable blood pressure as a result. Neurologist asked how often I had a migraine and I said "once" and then he asked how long "4 years so far". The cardiologist was much more help when we figured it out eventually. Heart surgery fixed it.

Chronic pain on that timeline does a lot of harm to your physical and mental health. I'm still re-learning how to relate and respond appropriately respond to pain as a stimulus. I'm dangerously used to ignoring it. Empathizing with other people's pain took years to re-learn despite recognizing my failure fairly one in the process. Feel free to email me ect if you want somebody to talk to. brendan.benshoof@gmail.com

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

#104

Post by avgDev » Mon, Oct 19, 2020, 7:02 PM UTC

I had an allergic reaction to fluoroquinolone antibiotics when I had a kidney infection. It resulted in visual disturbances, snow looking at bright colors and floaters. Some neurological symptoms, fatigue, numbness, tingling. Some musculoskeletal issues, such as tendon/muscle pain and cracking in many joints. This has been a constant struggle for 8 years now. I have met others who had the same reactions, some recover, some find help through diet, some can't walk at all. Doctors usually gaslight you, even though all these symptoms are now on the black box label, which these antibiotics carry.

I have gotten some relief. Initially, could not walk for few weeks due to severe pain. Remote work helps. However, as long as I keep consistent eating schedule, low sugar diet, and eat clean I can my symptoms pretty mild and can do enough to feel "normal". Sometimes I do get hit with nasty tendon flair up and need to brace it. Brain fog is gone and neurological symptoms have improved.

Apparently, there have been cases of individuals recovering after 10+ years. There was a doctor who did a lot of work with people affected by FQs but he unfortunately passed away. Thankfully, surgeons and other doctors are now coming forward discussing the issues and trying to figure out how the damage can be reversed.

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

#105

Post by blamestross » Mon, Oct 19, 2020, 7:02 PM UTC

Probably going to be braindead in my early 60s. I've had multiple chronic pain issues and I'm just turning 30. I had a lot of maladaptive coping mechanisms for pain, but I found coping mechanisms. Knowing I'm not likely to live to an old age is more motivating than disheartening, I need to get things done and live life now while I still can.

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

#106

Post by unwind » Mon, Oct 19, 2020, 7:06 PM UTC

DoreenMichele wrote: post #94

I rearranged my life to make protecting my health and caring for myself my number one priority. This includes working from home with flexible hours. I blog and I run a bunch of Reddits in part to try to spread the word about how to do this well and in part in hopes of developing an adequate income for myself. I have about six years of college. I can write. I know a bunch of useful stuff. But I can't work a "regular"…

Why does the immune system warrant scare quotes? Or are those some other kind of quotes?

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

#107

Post by devteambravo » Mon, Oct 19, 2020, 7:07 PM UTC

shrimp_emoji wrote: post #90

devteambravo wrote: post #66

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…

https://youtu.be/0iLD9uAdq4M

"There's been times where I could have folded". Hah.

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

#108

Post by cosmie » Mon, Oct 19, 2020, 7:09 PM UTC

ilaksh wrote: post #76

cosmie wrote: post #49

As others have said, you just sort of live with it and it more or less becomes routine/normal. At 19, I was diagnosed with Barrett's Esophagus, which is when you've had heartburn so much that the lining of your esophagus starts to mutate as a protective measure and develops cells similar to the lining of your stomach. The cell mutations make you predisposed to developing esophageal cancer, so I have to get it biopsie…

Have you looked into surgery for the reflux? I had something called "transoral incisionless fundoplication (TIF)" several years ago. It seemed to reduce some of my symptoms somewhat at first, but mostly regressed after several months, and never actually stopped my nighttime breathing problems/throat closing up. So I have been thinking I should try this thing called LINX. But I am really not sure if that one is better…

I did initially, but haven't explored it in a while. One of the fun aspects of Barrett's is that, in order to develop it, the issue has to have been present and untreated for quite a while. And the erosive effects by that point are too severe and act as a contraindication for most surgical procedures, including LINX it appears[1]. I also have a hiatal hernia which acts as another contraindication to most surgical therapies.

I hadn't heard of the LINX procedure yet and will definitely bring it up at my next GI visit. But the general consensus I've gotten from all of my GIs over the years is that surgical interventions for Barrett's is a door that can't be shut, and once you start you'll likely require progressively more invasive procedures over time rather than a one-and-done surgery. And that it's best to manage it with PPIs for as long as possible before opening that door (and the potential complications that come along with the surgeries).

[1] https://www.sages.org/wiki/linx-reflux-management-system/

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

#109

Post by lostlogin » Mon, Oct 19, 2020, 7:09 PM UTC

heavyset_go wrote: post #25

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…

> 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…

> Also, be aware that it is illegal for your workplace to pry about your health if you don't want to disclose specifics.

I’m sure this varies around the world and exactly what this looks like in practice isn’t simple. Here in NZ, if the illness has the potential to impact on your work I believe you need to disclose it.

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

#110

Post by jidiculous » Mon, Oct 19, 2020, 7:10 PM UTC

Raphmedia wrote: post #11

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…

Someone else mentioned in the comments that you must learn to push through and ignore your illness. That is true but comes with warnings. Your baseline will be at a different place than someone who is healthy. You must learn it and learn to have realistic goals. You should not try to push yourself past this, it will burn you. Especially if that illness is new and you are used to how you were previously. You won't be…

Yeah this is somewhat related to the spoon metaphor[1], right? Basically another term for bandwidth, and acknowledging and accepting that your bandwidth will be at a different place from someone who is healthy.

1: https://en.wikipedia.org/wiki/Spoon_theory