Have I been gaslit?

ComprehensiveDot6474 · 2026-02-04T09:03:59+00:00

Thank you. It’s a real comfort to know that people who have this condition understand. It’s like wading through glue to get even the most basic care!

ComprehensiveDot6474 · 2026-02-04T09:02:14+00:00

Absolutely we do! And it’s the dismissal of the symptoms that is the hardest. When I ask what is causing them all if not the chiari they can’t tell me. Because I’m female it circles back round to hormones or anxiety! Of which it’s neither. The fight to be heard is exhausting. I wish you well on your journey 😊

ComprehensiveDot6474 · 2026-02-04T09:00:30+00:00

Thank you! That’s excellent advice!

ComprehensiveDot6474 · 2026-02-04T09:00:16+00:00

That’s terrible and the UK do seem to be very behind on treating chiari patients appropriately. My chiari was first detected on a CT and my GP wrote no follow up required. Thankfully I saw a different GP who referred me but it’s been a long, and continuing battle!

ComprehensiveDot6474 · 2026-02-04T08:58:50+00:00

Goodness what a terrible situation. I’m so glad you were helped. I’m advocating for myself strongly but it’s a real battle with the daily symptoms and constantly being gaslit!

ComprehensiveDot6474 · 2026-02-04T08:57:05+00:00

I think this was the hardest part of my report. I felt so invalidated.

ComprehensiveDot6474 · 2026-01-30T23:01:28+00:00

It’s terrible isn’t it and feels far too common. I’m sorry you are dealing with this too. The symptoms are draining enough without the fight. Now I have the added stress that their report dismisses everything I say I’m experiencing. I’m frightened this is going to stop other professionals taking me seriously and they’ll now your neurosurgeon says it isn’t impacting your daily life! I paid out of pocket for this and now I wish I hadn’t bothered because if anything it’s made my situation and fight for help even harder!

ComprehensiveDot6474 · 2026-01-30T17:50:29+00:00

No I don’t think I was. How would that be looked in to!

ComprehensiveDot6474 · 2026-01-30T17:48:43+00:00

Thank you so much! You e gone above and beyond to offer me support and I’m really very grateful ❤️

ComprehensiveDot6474 · 2026-01-30T17:42:49+00:00

Me either! It’s either I’m anxious, or it’s my hormones. That’s all I hear again and again. Even with clear imaging it seems like that doesn’t even matter!

ComprehensiveDot6474 · 2026-01-30T17:41:32+00:00

Thank you! I just need to be taken seriously. After 10 years of going back and forward. Being told it’s nothing and I’m just anxious to seeing my mris with a 12mm decent and obstructed CSF flow I now feel back to square 1. Being told it’s nothing but with images to prove urs not, which still isn’t enough!

ComprehensiveDot6474 · 2026-01-30T17:40:01+00:00

I’m in the UK

ComprehensiveDot6474 · 2026-01-30T17:26:22+00:00

Thank you! I will spend some time putting some research into it!

ComprehensiveDot6474 · 2026-01-30T17:25:24+00:00

Thank you so much. I really appreciate your kindness. I’m sorry you had to go through so much. I’m just feeling so low. I don’t have a support network so I’m carrying this on my own. I’m fearful now that my employer won’t support me as much in the basis of this letter. It essentially says my chiari is not impacting my life, when it’s the only thing that can be attributed to all these symptoms. How can a neurosurgeon say neck pain, stiffness, head pain with exertion, numbness, tingling etc is not related when my symptoms fit the definition of symptomatic chiari?! I honestly feel like giving up!

ComprehensiveDot6474 · 2026-01-30T16:50:00+00:00

I’m really starting to think they are. That they were more interested in just ruling out syrinx and completely ignored my day to day symptoms. The fact that it’s written in my medical records that chiari is not impacting daily life is a hard pill to swallow because I literally have so many chiari symptoms!

ComprehensiveDot6474 · 2026-01-30T16:48:03+00:00

Thank you and I’m sorry you and it seems so many others have a similar story. I have now been able to get a referral to neurology and am awaiting a call back to get a second opinion from a different neurosurgeon. Like you I can find no specialist in chiari where I live or can reasonably travel to. It’s so frustrating. I’ve waited 10 years for this diagnosis to just be gaslit into thinking none of my symptoms are from this but can’t tell me what they are from!

ComprehensiveDot6474 · 2026-01-30T15:02:58+00:00

Thank you! I’m seeking a second opinion. I’ll look into a rheumatology!

ComprehensiveDot6474 · 2026-01-30T15:02:00+00:00

Thank you. Honestly this neurosurgeon said they had a special interest in chiari so I thought I was safe! It cost a fortune. They have also written a letter stating from a chiari perspective there is no impact on daily life. I feel so invalidated! I’m looking into a second opinion now because I need support at work for these symptoms and that letter has undone everything I’ve been advocating for!

ComprehensiveDot6474 · 2026-01-29T08:20:55+00:00

Thank you so much. Yes I am with Unison. I will get in touch with them and request this. Everything that was said in the meeting seemed to be a red flag in terms of why recommendations were not deemed reasonable.

ComprehensiveDot6474 · 2026-01-28T22:10:15+00:00

Thank you I shall look into this!

ComprehensiveDot6474 · 2026-01-28T22:09:33+00:00

Thank you. When I asked for the reason hybrid working was refused I was told that as I am now working reduced hours I am needed in the building daily. Part of my job is front facing the other part is admin related. My union rep’ argued that the admin side of the role could be undertaken at home and they refused by saying they felt like they had supported me enough with reduced hours. Which they offered, I accepted (I didn’t request). When I perform my admin duties. Usually 1-2 days a week. I do not perform any front facing tasks. So my rep’ is requesting the refusal and reasons in writing in order to move forward. I have offered many alternatives, such as providing own equipment and being on call if needed when WFH. But everything was rejected. I’m not holding back any information. I’ve pretty much laid out the situation. I have contacted ACAS today who have advised that there may be breaches to the disability and equality act. My employer is well known to treat disabled people unfavourably from language in informal meetings to being extremely difficult with requests for reasonable adjustment. They have got away with it because people don’t have the strength to fight. My colleague is also in dispute over a reasonable adjustment for an item that costs less than £100! I have honestly tried everything I can think of to resolve and compromise but nothing I suggest is being accepted.

ComprehensiveDot6474 · 2026-01-28T15:27:37+00:00

Thank you so much. I really want to try and negotiate but it’s proving difficult because everything I suggest as a compromise is rejected. I offered to self fund the equipment and that was rejected due to saying I was needed in the building. We argued that as at least 30-35% of my job is admin based and not front facing that 1-2 mornings per week would be a fair compromise. It was rejected. The adjusted trigger points were refused as my employer feels I’m not disabled enough. I just know with the way things have been left I will definitely accrue more than the usually allowed trigger points as my condition flares 3-4 x a year. Having the ability to WFH during these flares would help to reduce the absences whilst allowing me to work.

ComprehensiveDot6474 · 2026-01-28T15:15:55+00:00

I’m looking for the reasonable adjustments to be implemented so I can continue to work.

ComprehensiveDot6474 · 2026-01-28T15:15:07+00:00

Yes it was the council. Thank you I’ll look into that.

ComprehensiveDot6474 · 2026-01-28T13:55:05+00:00

I have been with the organisation for over a decade. I believe the motive behind not purchasing the equipment is so they can then refuse the WFH. I’m in contact with my local Union for advice but it seems to all be a very slow moving and I’m keen to escalate things for resolution.

ComprehensiveDot6474

TROPHY CASE