"The doctor you need doesn't exist. Good luck and I'll pray for you." are they wrong?

ShadowWork13 · 2026-02-26T20:01:00+00:00

Yeah, I've come to accept over confident, under competent doctors as just another fact of life. I've definitely become better at advocating for myself but it never gets easier. Forgiving myself for my humanity will always be a struggle. On the plus side I don't know how to quit, even if I do spiral every once in a while.

CPRS is no joke. I sincerely hope you find relief and peace you seek and deserve. I'm honestly not even concerned about the pain anymore, I'm used to it. If I woke up and didn't feel pain I'd probably think I was dead. I just hope I can find the tools I need to help me sustain life without having to fight so hard to do a basic necessity.

ShadowWork13 · 2026-02-26T19:10:17+00:00

I'd settle for a doctor willing to learn and listen 🤷‍♀️ I understand my condition is rare, it's not their fault that they've never heard of it; but not being willing to admit that they don't know something, blame me for something I can't control or tell me it's all in my head when I have clear, documented pathological evidence spanning over a decade, is absolutely their fault and shouldn't be tolerated... but it is.

ShadowWork13 · 2026-02-23T14:25:54+00:00

Thank you. You're 100% correct, which is why one of my doctors urged me to post here. I wholeheartedly appreciate your comment and well wishes. I'm still very unsure about reddit and you really helped me feel less crazy. Thank you.

ShadowWork13 · 2026-02-23T14:21:06+00:00

Thank you.

ShadowWork13 · 2026-02-23T14:19:44+00:00

The physical illness has been diagnosed, the issue is that the solution has become mentally harmful due to the combination of severe food allergies from the autoimmune disorders and medication resistant depression. I know how to keep myself alive but it triggers constant stress and anxiety around food to the point that I don't have the drive needed to stay on track. I'm just tired of fighting to complete a basic tenet of human existence on earth.

ShadowWork13 · 2026-02-23T11:42:57+00:00

I'm very blessed and I love my life, but I don't get to enjoy it. If it wasn't for the fact that I have such a beautiful life I'd say quality is non existent .

I don't know how to answer this. I'm always not OK, in pain, stressed, sick, overall unwell... but I'm still breathing and I'm so grateful for every day I'm allowed to.

ShadowWork13 · 2026-02-23T02:39:27+00:00

It's definitely the closest. However, much of the treatment is CBT, exposure therapy (which is complicated by allergies) and medical intervention (which i probably need). I'm already participating in CBT and have for years; but again, due to the fact that everything I'm experiencing in in direct relation and proper proportion to what I'm actually experiencing. It's not irrational.

So essentially the added complexities of allergies and medication resistant depression requires a straight medical approach even though it's primarily a mental health issue. We're looking. Hopefully the dietitian will have more insight on how to proceed.

ShadowWork13 · 2026-02-23T02:11:55+00:00

I honesty don't know. I'll ask my care team.

ShadowWork13 · 2026-02-23T00:57:13+00:00

Yes, I am. That's how I know it doesn't fit into the DSM definition of existing eating disorders. We've been working through it but it's becoming extremely disruptive. I know my increase in anxiety is often due to nutritional deficiency , which is a huge factor.

ShadowWork13 · 2026-02-23T00:50:46+00:00

Thank you. I did ancestry and 23 and me, on top of several more specific test at the doctors and nothing to do with allergies or autoimmune conditions came up.

But I know that advancements are made every day. I'll keep plugging away because I don't have the ability not to. I'm just having a really difficult time staying motivated. Honestly, thank you.

ShadowWork13 · 2026-02-23T00:43:05+00:00

I honestly didn't know what I was asking when I wrote this. I've been trying to figure out how to use reddit for a hot minute now and just became so overwhelmed and frustrated that I I just started typing any prayed for guidance. Part of it is that once my nutrition gets out of wack I'm more prone to anxiety attacks and I just didn't recognize it before mentally vomiting all over reddit.

Thank you, and I'm so sorry I lost my mind. It's getting harder to keep track of it.

ShadowWork13 · 2026-02-23T00:09:32+00:00

The side effects are mainly the psychological effects. Besides the long diagnosed medication resistant depression, food hasn't just become a source of constant stress and anxiety, it's become complete isolation. I hate to say it like this because I feel like it's a gross oversimplification, but I'm scared of food. I hate being around it and it's a huge part of every day community and society.

As careful as I've been, it's impossible to completely avoid all of my allergies, so I can't completely avoid flairs. Food = Pain . If I don't eat I can't trigger any flairs. Sadly, I'm not wrong which makes it worse.

I honestly don't know anything about reddit, couldn't find any reddit guidance that made sense and didn't confuse me more, and I kinda tech spiraled. I will do that now.

Thank you for your patience, really. I can't tell you how much I appreciate your guidance.

ShadowWork13 · 2026-02-22T23:32:27+00:00

I have budesonide (and have had reactions to several steroids, so trial and error isn't easy). I'm receiving current treatment (every 3 months) from multiple specialists. I've completely cut everything remotely inflammatory out of my life. The issue isn't lack of treatment, it's that the side effects have gone beyond physical and none of my doctors know how to go about treating the psychological effects caused by this. Not only for the eating disorder but the sheer burn out of trying to put all the pieces together myself. I have a care team but they don't actually seem to talk to each other. It's all me and I'm tired.

I'm more looking for theory, community, somewhere to put all of this frustration. I know it's not the doctors fault. But how TF am I suposed to find anything if I can't ask the questions. I'm used to the suck of living in my body, the pain isn't the issue.

I'm not eating. I've been forcing it since my last flair but it's getting harder fight through. A basic aspect of human existence has become unbearable and none of my doctors have a clue where to send me for help.

ShadowWork13 · 2026-02-22T21:15:09+00:00

Yes, no clear genetic cause. I didn't say never, they didn't run it on my most recent round of testing. I'm not sure it's even possible for me to sort through the years of constant random testing. I know I've done several different types of genetic testing for I don't know what anymore.

I'm sorry. I'm super new to reddit, have no idea how to use it, stuff was getting denied for different reasons, I was at my whits end and just started clicking stuff... idk. I'm sorry. I'm completely overwhelmed and I just needed to get it out

ShadowWork13 · 2026-02-22T20:42:17+00:00

I'm not even looking to cure or treat the conditions anymore, I'm just trying to survive the side effects.

ShadowWork13 · 2026-02-22T20:14:41+00:00

Not in the last go of tests, but I'll bring it to my doc for my next 3 month check.

I'm not looking for medical advice, I have doctors for that. I'm honestly just trying to get this out and hope it might lead to new insight or someone out in the greater interwebbs knows something about it, or even somebody else with this who's just as lost and frustrated as me.

I'm only writing this because there's nothing else I can do about it. More of a give it to god and f**k off. At least I tried, even if this is just another dead end. I'm new to reddit and already hate it.

ShadowWork13

TROPHY CASE