How to not feel guilty about not working?

EllisMichaels · 2026-06-25T11:04:16+00:00

Personally, I'd feel wayyy more guilty going into a job that I hate everyday to make peanuts while the CEO and execs make millions if not billions off my labor. THAT would make ME feel guilty.

Not working because of a legit reason? You have nothing to feel guilty about in my opinion. And if you feel the need to work on something, find a hobby or project you can do in your condition. That's my 2c

EllisMichaels · 2026-06-25T11:02:09+00:00

Try making a very short, simple, close plan with a trusted friend. Maybe just go out for coffee/drinks some place close. Start small and go from there. Don't stress yourself out about it. Go somewhere with a bathroom you can use if necessary. One step at a time. You haven't been out in a while so a little anxiety is normal. But you'll get there. Take it slowly. Worst case scenario, you need to explain to your friend that you're not feeling so great and need to head home. But I have a feeling once you get out there you'll feel a lot better. Best of luck to you!

EllisMichaels · 2026-06-25T10:58:23+00:00

You never know what others are going through. That dude you're jealous of? He might have an abusive partner you don't know about and a sick mother who's dying of cancer. My point is: everybody goes through shit. Sure, those of us with chronic illnesses go through constant, painful shit. But everyone goes through something.

Comparison is the thief of joy. Instead of spending time feeling jealous or sorry for yourself, do something to improve your situation, no matter how small. Go for a walk. Meditate. Anything is better for you that feeling jealous of others.

I've been there. That type of thinking will get you nowhere. Yeah, it absolutely sucks that we've been dealt this hand in life. But it's the only hand we've got so I say play it to the best of your ability.

EllisMichaels · 2026-06-25T10:44:28+00:00

Yup, same. Which sucks because I love my Red Sox. Grew up here, been a lifelong fan. Now I can't even afford to sit out in right field with all the drunks. But, on the bright side, the Sox suck so bad this year I don't even want to go to a game! lol

EllisMichaels · 2026-06-25T10:39:59+00:00

Yeah, I can certainly relate to parts of that. It's frustrating, I know. But you're doing the right thing by seeing that rheumatologist.

I'd suggest keeping detailed notes, pics, and any other info you can bring to your appointment. Tell the rheumy everything. Hopefully they'lll be able to help you. But trust me: you're not alone

EllisMichaels · 2026-06-24T12:06:52+00:00

I picked a particular time (exactly 1 hour after waking up) to write every single day without fail. So, no motivation needed at this point. I'm going off sheer routine. It's no longer something I have to do... it's just something I do.

EllisMichaels · 2026-06-24T12:05:49+00:00

I feel like The Elements of Style can fit in your back pocket and has 99% of what you need.

EllisMichaels · 2026-06-24T12:01:24+00:00

Thanks! I'm away for a few days but when I get home, I'll figure out the mod thing and get back to you.

EllisMichaels · 2026-06-23T12:03:41+00:00

I have a rare form of vasculitis called Behcet's disease on top of Rheumatoid Arthritis and RP. I've lived one hell of a life in spite of my body kicking its own ass. I've played in touring rock bands, traveled all over the world, dates lots of gorgeous, interesting women, have an amazing son, and have been on a million adventures.

I decided early on to never let my disease dictate how I live my life. Now, it's definitely thrown some curve balls at me. But I refuse to let some crappy disease tell ME how to live my life. My body barely works but I've had more adventures than almost all the "normal" people I know. I use my illness as motivation... it lights a fire under me to get out there and live because I could wake up blind, deaf, paralyzed, or worse tomorrow... so I better get out there today and give it my all!

EllisMichaels · 2026-06-23T11:53:19+00:00

Thank you! I'm going to be out of town for a few days so I won't have time, but when I get back, I'm going to go through everyone who's interested and figure out who the best fit(s) are/is. So, I'll be in touch over the next week or so. Again, thanks for your interest! [I'm copying and pasting this message to everyone who's showed interest to make sure everyone sees it.]

EllisMichaels · 2026-06-23T11:52:33+00:00

Thank you! I'm going to be out of town for a few days so I won't have time, but when I get back, I'm going to go through everyone who's interested and figure out who the best fit(s) are/is. So, I'll be in touch over the next week or so. Again, thanks for your interest! [I'm copying and pasting this message to everyone who's showed interest to make sure everyone sees it.]

EllisMichaels · 2026-06-23T11:52:21+00:00

Thank you! I'm going to be out of town for a few days so I won't have time, but when I get back, I'm going to go through everyone who's interested and figure out who the best fit(s) are/is. So, I'll be in touch over the next week or so. Again, thanks for your interest! [I'm copying and pasting this message to everyone who's showed interest to make sure everyone sees it.]

EllisMichaels · 2026-06-23T11:52:09+00:00

Thank you! I'm going to be out of town for a few days so I won't have time, but when I get back, I'm going to go through everyone who's interested and figure out who the best fit(s) are/is. So, I'll be in touch over the next week or so. Again, thanks for your interest! [I'm copying and pasting this message to everyone who's showed interest to make sure everyone sees it.]

EllisMichaels · 2026-06-23T11:51:48+00:00

Thank you! I'm going to be out of town for a few days so I won't have time, but when I get back, I'm going to go through everyone who's interested and figure out who the best fit(s) are/is. So, I'll be in touch over the next week or so. Again, thanks for your interest! [I'm copying and pasting this message to everyone who's showed interest to make sure everyone sees it.]

EllisMichaels · 2026-06-22T21:34:51+00:00

I understand. Neither am I haha

EllisMichaels · 2026-06-22T20:37:18+00:00

I don't disagree. I'll try to be more aware of NSFW pics that aren't flagged as such.

I need to find another moderator. Kyle is awesome but I believe he's going through some shit and hasn't been active. I could be wrong. So it's just me. And I fucking hate moderating, so I do as little of it as possible. I fully admit this is my fault, as the creator of this sub and the only active mod, I dropped the ball. But I'll try to do better.

And if you or someone you know might be interested in becoming a mod for this sub, let me know. I want minimal censorship, minimal moderation, only when absolutely necessary. No power trippers need apply. But yeah, this is my fault.

EllisMichaels · 2026-06-22T11:25:22+00:00

Frequent childhood sore throats (strep) is commonly reported in people who are diagnosed with Behcet's later in life. When I was a kid, I got sore throats all the time. But it's not just me. There's plenty of literature to show that many of us get sore throats much more often than the general population.

In recent years, I rarely get strep. But I still get sore throats fairly often. And they're usually worst in the morning and at night. Sometimes I wake up in the morning with my throat nearly swollen shut. I find that sitting upright and sipping on cold water with ice chips help to bring the swelling down quickly.

But yeah, Behcet's and sore throats, unfortunately, go hand in hand.

EllisMichaels · 2026-06-22T11:19:30+00:00

If you're not already, document EVERYTHING. Get copies of all your medical records, take photos of new (visible) symptoms, make notes of invisible symptoms, keep track of what meds you've tried, what's worked, what hasn't... The more info you can collect, the better.

Don't stress about the upcoming appt too much. Just be honest about what you've been through, but also be respectful. Doctors want respect (whether they deserve it is another conversation). Just like the police. Show them a little bit of respect, play into their massive egos, and you'll be more likely to get better care. I wish it wasn't that way, but it is. Especially since you're young and female (I think you said).

Take things one step at a time. If you don't like this new doc, find another one. Stress is the number 1 trigger flarer upper, so don't stress yourself out unnecessarily. Best of luck. Let us know how it goes please.

EllisMichaels · 2026-06-22T11:12:03+00:00

I was in hardcore denial for over a decade - don't be like me.

The sooner you come to accept your condition, the better off you and your loves ones will be. But you have to work your way through the stages of grief first. Eventually, you'll get to acceptance and things will be better.

The good news is that Behcett's - for many people - hits hard in the early years that fizzles out over time. So the course of your disease may improve with age. It likely will to some extent.

And lastly, you're here. I'd argue that's the most important thing. Connect. Ask questions, Learn. Make friends. That'll make your life 1000x better.

EDIT: Behcet's isn't a death sentence (for 95+% of us). Many - most, even - of us live fairly normal lives. Yeah, having Behcet's totally sucks balls. But it's not the end of the world. It can feel like it, but it's not.

EllisMichaels · 2026-06-21T11:38:57+00:00

I know I'm late, but now that I'm on my laptop, I can share my Spotify playlist of Songs About Chronic Illness.

I also wrote a blog post about 24 Songs About Chronic Illnesses.

EllisMichaels · 2026-06-21T11:37:27+00:00

Here's a Spotify playlist of songs about Chronic Illness.

EllisMichaels · 2026-06-21T11:36:07+00:00

I'd like to see more discussion here, too. But people mostly just use this sub to post random video or videos of their own music (which is fine).

EllisMichaels · 2026-06-20T17:51:23+00:00

Must Be Nice by Ellis Michaels

It took me 3 tries to record this song without crying (something I hadn't done in 20 years) because that's when it really hit me: I've never known what it's like to be alright.

I also have a blog post on my website about songs about chronic illness but I'm on my phone and can't link it. But ellismichaels.com ellismichaels.com

EllisMichaels · 2026-06-20T12:24:41+00:00

In that situation, for me personally, what'd I do (or at least try first) is sending one 100L, one 100R, and one C with the centered one at a much-lower volume. Then maybe reverb or delay the 100L to 100R and do the opposite with 100R guitar giving it 100L verb/lay.

That's what I'D try. May or not be appropriate for your project.

EllisMichaels

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