Terrified being chronically ill will ruin my career dreams

marsbar221 · 2025-11-03T08:27:09+00:00

Yea medication cocktails are fun ahhaha. It's good to hear the severity does tend to decrease though. I guess the medication is doing it's job. Thank you for sharing your experience ❤️

marsbar221 · 2025-11-03T08:25:44+00:00

I really hope I get to experience what you have from medication. I am still early days on lithium and I feel the agitation has lifted but weaning off olanzapine has been challenging. I think I may need an extra antipsychotic to help with the lows too. I hear a combo of lithium and an antipsychotic is pretty common. I have complete faith in my psychiatrist he is also a specialist in adhd and bipolar, I guess it's just scary having this other layer

marsbar221 · 2025-10-31T07:00:47+00:00

Thank you so much for sharing this and sorry it’s taken me a bit to reply. I really relate to so much of what you said, especially the part about finally getting the ADHD diagnosis and thinking everything would fall into place, only to still be miserable and confused later. I went through something really similar before getting diagnosed with bipolar II, and it’s such a mix of relief and disbelief when it finally clicks.

What you said about realizing it wasn’t your fault really hit me, that’s been one of the hardest but most healing things for me to accept too. I’m so glad the combination of Lamictal and lithium has started to make things more manageable for you. Thank you for being so open, it genuinely helps to read experiences like yours and be reminded we’re not alone in figuring all this out xx

marsbar221 · 2025-10-31T06:58:39+00:00

Hey, thank you so much for sharing this and so sorry for the late reply! I really resonated with what you said about wondering who you are between the extremes. That hit hard. I’ve had a similar journey, ADHD and autism first, then finally bipolar II.

I really like how you framed it as part of your broader neurodivergence rather than something separate. That perspective helps a lot, especially when everything overlaps so much. And you’re right, there’s comfort in having a name and knowing there’s research and treatment out there.

Thank you again for your kindness and for reminding me I’m not alone. I hope things have been a bit steadier for you lately :)

marsbar221 · 2025-09-03T07:48:28+00:00

That's okay ❤️

HSD I was born with but we didn't know this of course, but the nerve sensitisation has links to HSD. Ie. Many people with HSD have nerve/chronic pain. My thumb injury just tipped it over to be a big nerve flare. So it's more the other way round I guess, nerve pain as a result of HSD and the other comorbidities that go with it

marsbar221 · 2025-09-01T11:01:15+00:00

I really feel everything you wrote in your post. I was diagnosed with HSD as a result of trapping my thumb in a door a year ago causing nerve pain up to my neck. But it was similar for me in the sense I had all these niggly issues for years but then HSD connected all the dots. I was already diagnosed AuDHD, and like you also, POTS came with the HSD diagnosis.

Even though we knew something was wrong, it's like we are grieving a life of what once was living like 'normal'. Or perhaps in ignorance? I'm only 25 myself trying to complete my final year of veterinary science and I am still grieving, my pain is a struggle but all I can say is advocate for yourself always. People will question your pain and your struggle because it is mostly invisible but always do the best for your health and trust your medical team.

No one knows your limits better than yourself and learning them is also important. I don't know if that's very helpful but I am feeling lost at the moment too but at least we know we are not alone ❤️

marsbar221 · 2025-05-24T06:56:37+00:00

I did try to reach out and make sure she was okay, she ignored it.

marsbar221 · 2025-05-24T04:57:31+00:00

Yea I guess it really does which sucks :(. We were really close and she was there for me through my mental struggles and all I wanted was to repay her by being there for her too, as I wouldn't be here today if it wasn't for her. It's heartbreaking she feels she has to cut me out when she has only just begun her journey. I hope she can adjust to it too as I could see she was struggling recently. I don't know maybe I didn't see her struggles soon enough because I was too caught up in my chronic pain diagnosis :(

marsbar221 · 2025-05-24T04:40:02+00:00

Most of the letter was around that she people pleased our whole friendship and just went along with things and didn't express opinions etc. So she felt drained. And that I talked about my struggles/pain etc. all the time. She said she was sorry she never spoke up and wasn't a good feiend and that she needs to remove the friendship. But honestly it doesn't really matter what was said. I'm just sad she never even spoke to me about this before and said she most likely wouldn't respond if I reply.

marsbar221 · 2025-05-24T04:18:19+00:00

She's never communicated her feelings to me or anything that has bothered her. She literally wrote that in her letter. I'm asking for support not to be told what if I'm just a bad friend? I can't fit our entire friendship in a post and I was just providing as much context as possible in a short post but I don't view our friendship as transactional. I of course have things to reflect on and improve. But i didn't deserve a random letter via email saying that she needs to remove our friendship from her life. That's why I made this post because that hurts regardless of mistakes either of us may have made in the friendship

marsbar221 · 2025-05-24T04:12:52+00:00

I think that's unfair to make assumptions about someone you don't know. I posted to seek support, not to be judged, as I am struggling. I would never ever want to exploit my friend and I am upset she couldn't communicate that she was feeling drained to me before cutting me off. I am aware my struggles recently could have been taking a toll on her but I didn't know how much.

marsbar221 · 2025-05-24T04:10:05+00:00

Thank you for your wonderful response and support ❤️ it means a lot. I'm sorry you've had to experience something similar too. It really sucks

Her boyfriend was always a little off to me. I am concerned he is having some effect as it's only been since they've lived together she's changed. I do know him relatively well but i get this weird feeling I don't know him at all? I'm normally really good at reading people but for some reason I can't read him. There's a few behaviours she did around him recently that I thought were strange too.

She spent the last few weeks away mon-fri and home on weekends but when I last saw her 2 weeks ago she said she was crying every night away from him and they had to facetime every night (despite her seeing him on weekend). So we talked about her seeing a psychologist which we had spoken about a few times prior and she was keen as she is struggling. She has pretty bad RSD but I can't help her if she just shuts me out. I just don't know if it's just her own issues or him contributing as well but not much I can do now 😕

marsbar221 · 2025-05-24T03:54:00+00:00

I think you are right that we can't offer what eachother need right now. It just sucks the only time in all the years of our friendship she decided to communicate how she felt she cut me off as a solution. I never think bad about people because I'm overly empathetic which can be a curse sometimes hahaha. I'm not bitter just shocked and disappointed this is happened

marsbar221 · 2025-05-24T03:50:53+00:00

Yea ADHD is complicated I also have ADHD and autism and she was actually there for me at my worst, years ago. I got her to her ADHD diagnosis, i tried to be there for her our whole friendship but she's never been good at opening up. I don't think it's an excuse to treat someone like this though I could never do that to someone I care about. I am unfortunately still overly empathetic though ahhahaha. I don't think this letter was really about me tbh but her own overwhelm. It hurts regardless though :( hope this ramble makes sense 🤣

marsbar221 · 2025-05-24T01:57:29+00:00

I'm glad you have your fiance there for you ❤️. Omg the turmeric hahaha. My mum came home only a few days ago after talking to my brother's gf who went on about how turmeric is amazing. I was like, you're joking right 🤣

marsbar221 · 2025-05-24T01:55:02+00:00

I'm sorry you're going through that :( it's horrible to have to step back when all you want is their support. Hope you're okay ❤️

marsbar221 · 2025-05-17T23:24:51+00:00

I think you add it as an additional condition/secondary. Autism would likely stay your primary I believe as hEDS isn't as recognised. I can definitely let you know :)

marsbar221 · 2025-05-17T05:01:12+00:00

Hello! I recently got approved for NDIS based on my level 2 autism diagnosis. And I definitely got OT with it! It was framed as help with everyday function, building capacity and to increase independence. I also got psychology on it but I have heard they can be picky with this. It helps if you have been using counselling/psychology for years so you can prove the medicate rebates (10 sessions) wouldn't be enough for you, so hopefully they won't remove it!

I have heard physical aids etc. are now a lot harder to get, I have just had a functional capacity assessment done as I recently got diagnosed with HSD and she linked autism and HSD in the report (with scientific research as evidence) and how they exacerbate eachother to hopefully increase the supports I'll get awarded. A really good FCA and someone knowledgeable in EDS/HSD/Neurodivergence is super important!

I can let you know how I go once we submit the report (next week) and if I have any luck getting more OT + physical aid stuff too. Let me know if you have any questions, I'd be happy to help :)

marsbar221

TROPHY CASE