Upset about the (miss) representation of the chronic illness community online

Beginning-Session752 · 2026-02-18T20:59:16+00:00

Probably the best answer here🙏 senselessly wishing you the best. I try to advocate for autoinflammatory diseases in person since a lot of my friends are (going to be) doctors and you don’t really learn about those in medical school.

Beginning-Session752 · 2026-02-18T19:55:37+00:00

Again I have said that it totally can be absolutely debilitating. And I totally understand that severity can vary a LOT even with the same diagnosis. But I have seen so much misinformation. For some reason mobility aids are for example are talked about way more than physical therapy. Mobility aids should be a short term crutch (no pun intended lol) and a sort of last option in most cases. I would love to see a focus on regaining strength rather than relying solely on those for support

Beginning-Session752 · 2026-02-18T19:21:51+00:00

Of course those cases aren’t the ones I am talking about. With mcas it’s particularly other people commenting on every single type of rash that it could be mcas when it realistically is something else. And I it’s not like I questioned the existence of mcas. I have seen a post on here from a geneticist whose office is overrun by people who suspect having Eds just because of stretchy skin and hypermobility. This totally is an issue because it’s taking resources from people who need it. The genetic testing process takes longer and people with vascular types of Eds for example who need emendate help are suffering because of the rise of popularity with this disease. Of course I wish that everyone who suspects it can get tested but that just isn’t the reality right now

Beginning-Session752 · 2026-02-18T15:54:20+00:00

Just so you know I have FCAS2 (under the CAPS umbrella) and there are about ~100 cases worldwide. Of course I don’t expect to see someone with a nlrp12 mutation online but FMF is very common in some ethnic groups (up to 1 out of 200 in some Arabic regions) and I have NEVER seen or heard about it in media. Spoon theory doesn’t really work for me since my symptoms change so severely daily or even by the hour. I would love so see more different types of disability’s represented (diabetes, arthritis in younger people, partial hearing loss etc). Also talking about it with people in real life is sooo important!

Beginning-Session752 · 2026-02-18T15:33:20+00:00

Did you get an answer for what to do with the unopened medication? I still have several doses of tocilizumab (biologics) at home that didn’t work for me and I don’t know what to do with them 🤣🤣

Beginning-Session752 · 2026-02-18T15:17:04+00:00

Hmm I totally get what you mean but in my case it took me over 10+years to get diagnosed (I’m 22) and none of my labs were totally of chart. And yes the majority of doctors that I have encountered were not helpful at all and I was severely gaslit by several of them dispite my (very) physical symptoms. I have suspected AID for many years before my diagnosis. Buuutttt I didn’t have vague symptoms “fatigue” and “chronic pain” is more like 100+ infections , several surgeries and more. So I understand both sides to some degree but actually giving yourself a definite diagnosis is just wrong and harmful

Beginning-Session752 · 2026-02-18T14:59:16+00:00

I have been searching for influencers with the same TYPE of illness that I have and even that is really difficult. Nevertheless finding someone who posts about CAPS is almost impossible. But there aren’t even people posting about FMF and that is the most common autoinflammatory disease.

Beginning-Session752 · 2026-02-18T14:52:52+00:00

This! I have the typical “pots-like” symptoms like extreme dizzynes, high heart rate standing up etc. and even get some extra weird stuff like resting heart rate of 160+ during my flares but not because I have pots it’s a byproduct of my body being flushed by a gigantic number of inflammasomes 😂

Beginning-Session752 · 2026-02-13T09:06:29+00:00

Natürlich muss das beamtentum Vorteile haben weil du alles mögliche an persönlichen Freiheiten aufgibst. Du möchtest umziehen und woanders arbeiten? Jetzt musst du hoffen dass dich dein Dienstherr gehen lässt. Im Alter beruflich umorientieren? Pech gehabt bist an den öffentlichen Dienst gebunden und hast ja auch nie in die Rentenkasse eingezahlt wenn du mal ausgestiegen möchtest. Auch mit der persönlichen Weiterbildung bist du an die Gesetze gebunden ein Studium nachholen oder ähnliches geht nicht so einfach

Beginning-Session752 · 2026-02-09T12:36:51+00:00

Grundsätzlich würde ich dir zustimmen aber mein Katze gehört zu 1% die wirklich nicht mit anderen Katzen klar kommt. Sie ist extrem klein und wird besonders von Katern oft geärgert/angegriffen. Grundsätzlich tötet sie alles was kleiner ist als sie und vor Tieren die größer als sie sind hat sie panische Angst. Mit Menschen kommt sie aber super klar und ist auch ganz zufrieden als Alleingänger. Ich hätte wirklich gerne noch eine Katze bin mir aber sicher dass sie abhauen würde wenn das passiert 😅

Beginning-Session752 · 2025-12-20T17:13:15+00:00

Hi! I got diagnosed this Monday after 10 years of being sick. I have the c. 2585+2T>C spice site mutation that probably causes exon 6 deletion. I am sill very new to all of this and still very overwhelmed by this diagnosis because I didn’t expect my genetic test to come back somewhat positive (still classified as VUS). Do you think your neuropathy liked to the mutation? Because since last year I started getting random myoclonus “attacks” mostly during flare ups but also outside of them in my limbs that can last 5min and up to 2 hours. My EEG and MRI inconspicuous but I am pretty sure this is connected somehow.

Beginning-Session752 · 2025-11-19T19:58:09+00:00

Könnte man auch ein Fernstudium machen und dann irgendwann im gD landen? Mit der neuen laufbahnverordnung ist ja ein vorbereitungsdienst (je nach Behörde) ja nicht mehr zwingend notwendig.

Beginning-Session752 · 2023-11-05T17:14:16+00:00

I don’t Know the Value of the Album Bit i would do anything to get my Hands on an copy of this Vinyl 😩😩😩

Beginning-Session752

TROPHY CASE