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 the same, and that's alright. Don't aim for "healthy person + 10%". Instead, aim for "your reality + 10%".

What is important is to learn to aim for a little above that baseline. Push yourself in realistic ways. Hit the gym even if you don't want to. See a therapist even if it feels like a chore. Do all the thing you won't want to do. They are hard and it's okay. Especially if you were down for a long time, you probably developed bad habits. It's okay to be lazy at the start but you need to find your cruise speed.

Push yourself as hard as your illness allows. If that means only being able to go to the gym once a month and taking short walks on most weeks, then so be it. But stay active, both of mind and body.

Know exactly what your illness allows you. Once you start pushing yourself you will be tempted to ignore these limits - don't. Be upfront and honest with yourself. Learn to say no.

Nice comment, but one nit: I think awareness + acceptance + gratitude is a better path than ignoring an illness. I say this as someone that has a lot of deeply ingrained avoidance behaviors (e.g. smoking weed 24/7 to mask anxiety and pain, isolating myself to avoid social anxiety). Obviously, ignoring problems can often make them worse, and sometimes simple solutions do exist (e.g. I have had disabling IBS off and on for 20+ years that is improved significantly by avoiding alcohol and taking fiber). That said, everyone needs relief at times, so be kind to yourself about avoidance patterns.

Awareness is simply noticing how I feel without judgment or reaction, but with the attitude of a curious observer. So instead of A: (feel pain —> “I’m fucked up / disabled” narrative) or B: (feel pain —> <ignore> —> <subconscious avoidance behaviors>), it’s like C: (feel pain —> “this is a sensation I’m experiencing” —> <no action>). Needless to say, this is not an easy thing to do and takes practice.

Acceptance to me means not defining myself or my self-worth in terms of my illness(es), or comparing myself to others. However, it does not mean accepting defeat or relinquishing hope that things can improve.

Gratitude looks like being aware of and thankful for the wide world of things that you can do and experience, the people that love you (even if you can’t think of any, they’re out there), and remembering the “fact” that being a conscious creature in this strange and beautiful universe is an infinitely valuable gift.

I very much agree. I do not recommend "ignoring" anything, but I wanted to address this point since I saw it coming up in other comment threads. Acceptance is a very good word to describe it. You came up with some great points, I'll do my best to remember them.

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

I've read this metaphor and know a lot of people who use it. It's very easy to use and explain, which in my opinion is its power.

I don't personally use it, but I'm sure being aware of it has changed my perspective. That probably explains why you can recognize it in my personal philosophies.

I pushed through for 20 years. I knew something was wrong, but doctors and family were awlaeays dismissive.

My body and mind completely gave out. I’m essentially fully disabled, but because it’s not directly visible I couldn’t get disability. Even when I was in bed lights off for 18+ hours a day in horrible agony.

There are limits to what the body can take without correct treatment.

> 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 about your health if you don't want to disclose specifics.

In my experience it is best to limit sharing about even having an issue to an absolute minimum. You'll probably have far more detractors than supporters. Be very selective. People will unpleasantly surprise you unfortunately. Most people are disability skeptics.

If you have to go to HR to get accommodations, you should get a different job. In my experience, when a manager won't make accomodations without that, they won't do it with it or they'll hold it against you. My manager at Intuit just said "no" to every single request my doctor had written down. HR's response was to just shrug their shoulders and say they have no authority. The next company just laid me off for having too many doctor's appointments.

The best thing you can do to improve your work-life with a chronic illness/disability is to find a great manager. The company that laided me off only did it after my manager changed away from the person I actually interviewed with. Remote work is generally easier to keep your illness from being noticeable to as many people.

And while it is illegal for your workplace to do all sorts of things, they will still do it. Suing a current/former employer is a nuclear option that will likely hurt you far more than it could ever help you. They can always get retribution every time a future employer calls to confirm previous employment.

It's been 5 years now, and I still feel guilty about not suing Intuit over my entire experience there. Not because I needed the attention, money, drama, etc. Just because I know they continued doing it to more people like me after I left.

As a more practical matter, I've found it really important to be smart about when I change/add/remove my prescriptions. If you take enough drugs, there will be bad side-effects, and you don't want to have it happen on the day of your annual review (speaking from experience), big presentation, etc.

> In my experience it is best to limit sharing about even having an issue to an absolute minimum. You'll probably have far more detractors than supporters. Be very selective. People will unpleasantly surprise you unfortunately. Most people are disability skeptics.

This has been my experience, as well. I only gave that advice because I know of several people who wear their conditions on their sleeve and are successful doing so, however it's certainly not the path I would choose for myself. I agree with the rest of your post, as well.

> If you have to go to HR to get accommodations, you should get a different job. In my experience, when a manager won't make accomodations without that, they won't do it with it or they'll hold it against you.

I'd be careful of this approach if there is something like a company rule that all accommodations must go through HR.

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.

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.

> 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.

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.

"just" seems a pretty dismissive framing...

Sure but not everything is the same degree of disabling. Heavy arthritis might leave you unable to type, fatigue (non serious, non chronic) just makes it hard to get out of bed. Both are challenges requiring the perspective of taking it one day at a time.

This is great advice. Stability and looking after yourself are key strategies to make your life easier. Save money if you can. Having a buffer makes it easier to say no or walk away or take time off.

I think that the invisibility of chronic illness combined with the expectations of society and others is the hardest thing to deal with. Especially during certain life phases, and especially with people who are close where the expectations reveal themselves over time (family, partners / their family, business associates). Empathy can erode over time too.

Every man and his dog will give you advice how to manage or cure things, but in the case of an ambiguous chronic illness, I found that being selective about who you listen to / when you listen is best. Some days you say to hell with it and ignore everyone's advice. Other days you will wake up and say, today is the day I am going to try this that I haven't tried before. Also keep an eye out for those little things that make a difference that nobody knows about but you. Don't feel like you have to justify them to anyone.

Sometimes there's even conscious bias against vulnerable people. For example, VietJet forces anyone who has any type of injury, disability or is pregnant to sign an indemnity form before being allowed to board. If you read what you're signing, you'd also notice that it goes beyond the condition and grants VietJet indemnity over anything that happens on the flight.

> This won't cure it (don't listen to people that say it will)

I've learned not to listen to people that say that I can't or it won't.

This is exactly my point. Make your own opinions about everything and don't let someone else's views demoralize you if they are irrelevant to you. :)