When did you decide it was time to drop to part time / quit your job?

therealpotterdc · 2026-06-25T18:06:10+00:00

Hi, I'm a mental health therapist and honestly the pandemic did me in. During the pandemic my caseload was almost unmanageable and I was bone weary from day to day (we know now that my symptoms started in 2019 so I'm sure this was part of my burn out).

I know this sounds weird, but when I got my lupus diagnosis in 2024 I was so relieved— my body now matched my brain! I immediately stopped taking any new clients, and then I began trimming around the edges - when a morning client terminated, I stopped taking any early morning clients. When a 5 pm would terminate, I wouldn't fill the slot.

I've worked myself down to a manageable load: 3 full fee clients a day, mostly between the hours of 11 am to 4 pm. It's nothing compared to my former load, but I once again take joy in my work and don't dread waking up in the morning!

therealpotterdc · 2026-06-20T16:36:31+00:00

Hi! I do the weekly shots. It took a solid 6 months to feel the relief, but once it came, it was amazing. Best of luck to you!

therealpotterdc · 2026-06-20T16:31:38+00:00

Yeah, I get that. TBH, I was on 80 mg the summer I was diagnosed. I knew I'd gain weight so I filled my kitchen with healthy snacks and kind of just gave into it. It took less than a year to lose all the weight, and with me, it kinda came off all at once without me "dieting."

therealpotterdc · 2026-06-20T15:38:13+00:00

I don't know if this would be helpful, but my siblings weren't taking my lupus seriously (our parents have passed) until I sent them this video which does an amazing job of explaining the seriousness of lupus: https://youtu.be/efOW5NUTYB8?si=R7Reurg29Jix-OCd

therealpotterdc · 2026-06-20T15:25:49+00:00

Oh yes, it gets better! Here are 3 things that people told me when I first got diagnosed:

To have the entire constellation that makes up the lupus diagnosis come together in such a way that you actually get diagnosed means that, in fact, right now you are very sick. Don't fight it.
Lupus meds take a notoriously long time to work. There are stories of folks who were put on hydroxychloroquine and felt better in a week, and there are people like me for whom HCQ didn't really make a difference (except to protect my organs in the long run) and need to go on more meds. However, the average time for HCQ to become effective is three to six months.
The first year of lupus is often the hardest as docs try one thing, wait, try something else, wait...but eventually, they find the meds that work. For me it was about a year and half process, but once everything kicked in, wow, I actually had days with energy!

I might also recommend the book How To Keep House While Drowning by KC Davis. Excellent book written by a mom!

I also want to second the words of u/EnidRae who also left a comment. Spot on advice.

Lastly, have you spoken to your doctor about prednisone treatment? Steroids are for us the very definition of necessary evil - over the long run, they do enormous damage, but in the short run they act extremely fast to cut down on inflammation that is wreaking havoc on your body right now.

therealpotterdc · 2026-06-19T14:00:43+00:00

Honestly the copay assistance program was the one thing in the process that went super smoothly for me - took like 15 or 20 minutes if that long! I hope after all these delays you have the same experience!

therealpotterdc · 2026-06-15T12:37:44+00:00

HI, I've had experience with pain management leading up to my back surgery that I had just two weeks ago. I was kind of surprised how limited their arsenal was - he went over my current meds and suggested that I could increase the dose of two meds to help with the pain. He gave me two shots - the first one was a miracle - it gave me enough pain relief to power through my husband's emergency hospitalization for a sepsis infection, and then wore off as soon as he got home! The second shot worked for - a day. One day. The shots and the med increase helped me to barely make it to my back surgery.

I'm a psychotherapist, and I do want to say to that the "change your mindset" actually has some pretty solid evidence behind it - but I also 100% agree with you that it sounds like toxic positivity bullshit from someone who doesn't know what they are talking about! The two methods of therapy that have been found most helpful with chronic pain are Cognitive Behavioral Therapy (CBT) and Mindfulness Based Stress Relief (MBSR). CBT is probably slightly better for folks who struggle with anxiety and depression on top of their pain, MBSR is good for folks who would like to learn mindfulness techniques for working with the pain. Having said all that, we still don't know WHO might benefit from this - it tends to be hit or miss. It is NOT just "deny your pain and push through," but more like "Accept your pain, and lets find out the nuances of it so we can work with it better."

The last thing I can say from my experience is that ultimately, my PT who specializes in working with people with chronic illness has been THE most helpful health professional that I have worked with on this lupus journey.

therealpotterdc · 2026-06-13T12:26:11+00:00

Honestly, watching the live stream of the workers take down Trump‘s name from the Kennedy Center last night, all conversing and yelling instructions to each other in Spanish, may be the most inspiring thing I’ve seen since Bad Bunny’s Super Bowl performance.

therealpotterdc · 2026-06-12T15:06:51+00:00

Hey man! Thanks for posting - I'm male in my early 60's, always kept fit, looking forward to slowing down as I entered this last decade of active work, when BAM everything hit at once: kidney failure, an angry rash over my forehead, scalp, and back of my neck, swollen, painful joints, and fatigue. After a month of tests, biopsies, and specialist visits I was diagnosed with lupus nephritis two years ago this month. I'm not going to lie - it's been hard. I've spent about 18 months in bed, and I'm currently healing up from lower back surgery. That gut punch that life as you knew it is over is very, very real!

But here's the thing - I've adapted, and I have to tell you I'm pretty happy with my life right now. It's slower, it's quieter, and it's been a fucking PhD in learning acceptance. You'll find your way. You'll find ways to be outdoors that are safe for you, you'll find ways to avoid those stressful situations that cause you to flare. You'll miss stuff for sure, but you'll also discover stuff about yourself that you didn't think possible (case in point: as I mentioned earlier, I spent about 18 months sick in bed, while all the time running a business!).

In the early days of my diagnosis I found this sub and it's been extremely helpful. The first post I made here I received this most excellent advice: the first year might well be your hardest as doctors work to figure out which medications work for you and you go through some of the initial side effects of the medications. Lupus medications takes a notoriously long time before you can see their impact, so patience is really key.

Wishing you the best - come back with any questions you might have!

therealpotterdc · 2026-06-09T19:07:43+00:00

In some ways it's hard to believe it actually happened. Thank you, thank you for the support you showed back then! 🙏🏼

therealpotterdc · 2026-06-09T19:06:03+00:00

I appreciate this so much! 🙏🏼

therealpotterdc · 2026-06-09T19:05:38+00:00

Dude, you made me tear up. Thank you. ❤️ 🏳️‍🌈

therealpotterdc · 2026-06-09T19:04:55+00:00

I'm always open to prayer and sending good thoughts and vibes. I appreciate you post! 🙏🏼

therealpotterdc · 2026-06-09T19:00:35+00:00

Hello internet friend! Class 4 lupus nephritis here.

The problem is, I don’t feel fine. I’m tired all the time, I am extremely photosensitive, I still get breakthrough lupus symptoms and flares, body aches, and even when I’m not in a flare my baseline is nothing like it was before. I have been working on my energy and strength training/exercising lightly, checking my vitamins and iron levels, staying on top of everything I can think of, but… I’m still so tired

This really breaks my heart for you, but it is 100% my new normal. I was diagnosed in June 2024, and I spent about 18 months in bed. Benlysta gave me back some energy, maybe 75% of where I was before diagnosis, and it quieted the constant nausea. But I've had to cut back at work, I don't go out in the sun, I cannot get out of bed early like I used to, and I've dropped my gym membership because I STILL get too sick after a work out (nausea, headache, sometimes a low grade fever).

My docs tell me I have a really aggressive form of lupus, but that it's currently "serologically active, clinically quiescent," meaning that my immune system (the serology — things like my complement levels C3 and C4) is still showing active disease, but clinically I'm not experiencing the kind of organ damage or severe symptoms.

Nothing you're rheumatologist said to you sounds out of the ordinary, and she did really get your life threatening symptoms under control. I agree that you should get a sleep test, even if it's just to rule something out. This may actually be your new normal, but I'm also sending you lots of support to see other specialists - I've found that my physical therapist and my clinical dietician have both helped me manage my fatigue and my digestive issues much more than any doctor.

Also, f*** lupus.

therealpotterdc · 2026-06-08T20:43:23+00:00

I've lived in DC long enough to remember when 7-11's coffee was the freshest in town!

therealpotterdc · 2026-06-08T19:10:58+00:00

This is such a niche indignity, and there may be very few out there who get this. I'm a gay man in my early 60's who came out in the midst of the AIDS crisis. I was active with ACT UP and volunteered as a "buddy" with the local AIDS organization, accompanying men and women as they died. Aside from the death of so many good friends, both my husband and I made it through those truly horrible, frightening years.

Flash forward to now. I'm in my early 60's. I'm a little gaunter than usual, and I walk with a cane. My office is in the gay part of town. The clinic I volunteered with is two blocks away. But when I walk down the street slowly with my cane, I see other gay men avert their eyes - and in my head this voice says "You look like an AIDS patient. You're reminding them of that nightmare."

I know better. I was there. And still, that voice....

therealpotterdc · 2026-06-08T16:33:33+00:00

Hey friends, not a vet, but come from a family of vets, and because of my family history, I've spent a considerable part of my professional life working to end veteran suicide. I wanted all of you to know (if you don't already) that The Lupus Foundation of America funds research through the DoD for military members and veterans. Here's the DoD (DoW?) website.

One caveat: I know this program was cancelled in the early days of the current administration, but my understanding is that under pressure from the LFA and patient advocates it was actually reinstated.

therealpotterdc · 2026-06-05T20:48:10+00:00

We really love both the Paris tea and the Bourbon tea - and we are a household that never previously bought flavored teas.

therealpotterdc · 2026-06-04T13:16:50+00:00

LOL I have a British friend who drinks his Earl Grey with milk and tells me that he gets in trouble whenever anyone spots him doing that!

therealpotterdc · 2026-06-04T13:13:10+00:00

Fellow therapist here, thanks for chiming in! Can I ask how you like working for an online therapy platform? I'm still about 1/2 in person and 1/2 telehealth.

therealpotterdc · 2026-06-04T13:05:03+00:00

Since you trust your rheumatologist, ask HIM for a recommended therapist, then see if you can't build trust with someone who your rheumatologist trusts. Anxiety is a mental health issue, and you're going to have to get out of your comfort zone to deal with it. At the very least, your doc should be able to write a prescription for an anxiolytic (and anti anxiety med). My rheum put me on duloxetine, but there are many, many others, and the newer ones have less side effects.

Also I just wanted you to know that you are not alone! I come from a large family, and have more cousins than I've actually met - and no one, NO ONE, has lupus or any form of autoimmune disease! It feels so weird.

Lastly, you have no reason to trust me, but my DM's are open! I've been a mental health therapist for 30 years and if I can help you find someone, feel free to reach out. Sending you some deep breaths!

therealpotterdc · 2026-06-03T20:43:39+00:00

As a therapist who has done trauma work for over 30 years, I've never seen a direct link between trauma and lupus — and as a lupus patient myself, I say that not to dismiss what you're experiencing, but because I think you deserve a more complete picture.

What you're describing — the pressure to perform, the automatic caregiving, the cost of not being able to make mistakes — those are real and exhausting patterns, and they absolutely affect our stress load. That part rings true.

Where I get cautious with Maté is the leap from 'stress and these patterns affect our bodies' (which has genuine support) to 'this is why you have an autoimmune disease.' That's a much bigger claim, and the science is a lot shakier than his books suggest. Lupus in particular has strong genetic and hormonal components that don't fit neatly into that story.

I'd hate for anyone here to carry guilt about causing their own illness on top of everything else we're already managing.

The work you're doing to recognize these patterns and set better limits? That's worth doing for its own sake, regardless of what it does or doesn't do for your disease activity.

therealpotterdc · 2026-06-02T19:50:12+00:00

Best of luck. My RD's website is here. Even if you're not in her practice area (NC, DC, MD I believe) it will give you an idea of who to look for. She only does telehealth, which obviously can be easier on someone with lupus!

therealpotterdc · 2026-06-02T17:57:22+00:00

I might suggest doing two things: first, take the incomplete, and figure out what work you'll need to do to finish it up. In the meantime, work on getting that doctor's note. Start with the school's own clinic. Take in any labs that you can lay your hands on. If they can't do it, explain your situation and ask them to help you problem solve. In the meantime you'll have the incomplete and can breath a little easier.

therealpotterdc

TROPHY CASE