u/StrangeBox9000

TLDR:
- do other people with dissociation use lanyards /physical signifiers that they have a disability

- If i use a sunflower lanyard i feel like i’ll be misusing it as i’m not using it for accomodation reasons (except perhaps it might help people be more patient when i’m struggling ?) , more i want to use it to see if it improves fatigue caused having to pretend to be not mentally ill.

- do other people who dissociate and don’t have autism dissociate due to sensory input, find it hard to emote or control their expressions when dissociating, and experience difficulty talking / become nonverbal. Trying to figure out whether these are normal dissociation things or not :’)

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I’m currently trying to convince myself it’s okay to use a sunflower lanyard and was wondering if anyone else who struggles with dissociation uses a sunflower lanyard or any other physical indicator that they have a disability?

I have had chronic dissociation for almost 10 years and it’s completely changed how i think, function and relate to people. I think a part of me thinks i function quite well so why do i need the lanyard? I don’t want extra help/support. I know dissociation can be debilitating for allot of people, but personally i feel my dissociation is around because my brain knows i need to be high functioning despite the negative things in my life.

However another part of me thinks maybe it would help take some pressure off. Sometimes i find socializing incredibly tiring due to brain fog /dissociation, my brain literally can’t keep up with people without incurring extra fatigue, and the fatigue and dissociation can make it hard to even attempt to emote normally because i’m trying to mask the fact that i feel weird and tired and my brain is struggling. I also find loud environments trigger dissociation and brain fog, verbal instructions can be hard for me, and i can be quite slow communicating sometimes.

I don’t necessarily need help from people, how i exist currently is fine, but I don’t like feeling like i have to “pretend to be normal”, and hide my cognitive issues, it’s so so tiring, but i don’t think that’s the point of the lanyards. I do sometimes dissociate to a degree that is worrisome and makes me quite vulnerable to other people if they were to have ill intent, and it can shut down my ability to communicate either partially or fully, but that’s not frequent, but i guess it would help to have the lanyard with some cards on to explain to people that i have lost my thinking and communication skills temporarily.

Unrelated but do other people also dissociate like this ? I talked to a GP about my dissociation a while back and they said it sounded more like autism causing dissociation than just dissociation by itself :’) i haven’t given it much thought because i just assumed this was typical dissociation but if non autistic people don’t dissociate like this maybe i should look into it.

For context - sunflower lanyards are used to signify to people you have a hidden disability, i think it’s often used for people with conditions like autism, learning disabilities, pots or seizures so they can access accommodations easier or get help when needed either in an every day sense, like if you’re in a shop or school or airport, or if they are having a lapse in their health it can help people understand that they have a disability and how to help them. I don’t know if they’re used so much by people with mental health issues tho, which is not to suggest they shouldn’t be, i just haven’t heard of it before.

Hi - not looking for an armchair diagnosis or anything. One of my family members has had ME/CFS and fibromyalgia for a few years and was recently told by a doctor they suspect schizophrenia (this doctor has not spoken to or seen the family member at all and we get the vibe that they don’t want to they just want to admit the family member to a hospital), it’s not uncommon for people with ME and fibro to get dismissed and misdiagnosed with random psychological ailments and also to get incorrectly sectioned. I’ve been trying to research this and have been struggling to find the info i’m looking for, so I was hoping I could ask the people of this sub-reddit whether they experience any of these symptoms ? So I can figure out whether to take this doctor seriously or run for the hills. I’ve briefly read deficit schizophrenia has similar ME and fibromyalgia like symptoms, but the papers i’ve read aren’t very specific in regard to what symptoms and whether they’re experienced the same or differently.

Here are some (not all) of the symptoms of ME and Fibromyalgia:

Post exertional Malaise : a worsening of ME/CFS symptoms (debilitating fatigue, headaches, dizziness, sensory sensitivities, orthostatic intolerance, cold and flu symptoms etc) brought on by normal every day activities that should be manageable to a non disabled person - usually delayed in onset by hours or days, the symptoms are disproportionate to the activity, and it takes hours, days or weeks to recover from.

Debilitating and chronic fatigue with unrefreshing rest. Generally ME fatigue makes any small task feel tiring, eating food is draining, talking a few words is draining, reading a small amount is draining etc

Sensory sensitivities (like light sensitivity, noise sensitivity)

Cold and flu symptoms associated with fatigue flare ups (sore throats, headaches, body aches, sniffling)

Orthostatic intolerance

Balance issues and weakness

Wide spread body pain and hypersensitivity (i.e. non painful stimuli like crisps feel sharp and painful to eat, cool water is intensely painful, allodynia type stuff)

Brain fog

From what I thought I knew I was under the impression that deficit schizophrenia shouldn’t cause someone to feel like they have severe flu allot of the time, and doesn’t make people feel like they’ve been poisoned due to the severity if their debilitating sickness/infection like symptoms, but perhaps i’m wrong ? My family member has been rendered bed bound by the severity of their disease and can barely support themself.
To clarify allot of suffers with ME are quite fragile, so i’m asking all this as being admitted to a hospital would be very dangerous if doctors involved don’t take the Me/CFS seriously, but we also don’t want to reject this possibility if it actually has some validity and lines up.

Edit: to clarify this doctor thinks the symptoms of the ME/CFS means they have deficit schizophrenia, they don’t have any delusions, disorganized thinking, hallucinations or paranoia to my knowledge, they are just very tired and sick and are bed bound.

Hi, apologies, I’m not sure if this is appropriate for this sub -reddit. I’m a carer and my family member was advised by a doctor to get a psychiatric assessment, but they won’t assess them in a way that is accessible to their condition. They have ME/CFS, and can only talk via text and in very small bits. Does anyone know of any psychiatrists or services (private or NHS) that might be good with accessibility? Or has anyone had any luck with this ? I’ve contacted a few and they’re not interested in giving it a go.

(I thought I’d clarify incase there is any misinterpretation that the assessment is not happening because of any confusion regarding the physicality of ME/CFS, a person can have ME/CFS and also have mental health conditions as well, and any treatment occurring is only happening when explicit consent is given).

Hi, apologies, i’m not sure if this is appropriate for this sub -reddit. I’m a carer and my family member was advised to get a psychiatric assessment by a doctor, but they won’t assess them in a way that is accessible to their condition. They have ME/CFS, and can only talk via text and in very small bits. This isn’t just a preference, it’s bad for their health to do more than that. Does anyone know of any services/ organisations (private or NHS) that might be good with accessibility? Or has anyone had any luck with this ? I’ve contacted a few and they’re not interested in giving it a go.

(I thought i’d clarify incase there is any misinterpretation that the assessment is not happening because of any confusion regarding the physicality of ME/CFS, a person can have ME/CFS and also have mental health conditions as well, they can be two separate issues).

(A small note - this is not a plea for any medical advice, this is about accessibility in medical services.)

Hi, apologies, i’m not sure if this is appropriate for this sub -reddit. I’m a carer and my family member was advised to get a psychiatric assessment by a doctor, but they won’t assess them in a way that is accessible to their condition. They have ME/CFS, and can only talk via text and in very small bits. This isn’t just a preference, it’s bad for their health to do more than that. Does anyone know of any psychiatrists or services (private or NHS) that might be good with accessibility? Or has anyone had any luck with this ? I’ve contacted a few and they’re not interested in giving it a go.

(I thought i’d clarify incase there is any misinterpretation that the assessment is not happening because of any confusion regarding the physicality of ME/CFS, a person can have ME/CFS and also have mental health conditions as well, they can be two separate issues).

Hi, apologies, i’m not sure if this is appropriate for this sub -reddit. I’m a carer and my family member was advised to get a psychiatric assessment by a doctor, but they won’t assess them in a way that is accessible to their condition. They have ME/CFS, and can only talk via text and in very small bits. This isn’t just a preference, it’s bad for their health to do more than that. Does anyone know of any psychiatrists or services (private or NHS) that might be good with accessibility? Or has anyone had any luck with this ? I’ve contacted a few and they’re not interested in giving it a go.

(I thought i’d clarify incase there is any misinterpretation that the assessment is not happening because of any confusion regarding the physicality of ME/CFS, a person can have ME/CFS and also have mental health conditions as well, they can be two separate issues).

Hi, apologies, i’m not sure if this is appropriate for this sub -reddit. I’m a carer and my family member was advised to get a psychiatric assessment by a doctor, but they won’t assess them in a way that is accessible to their condition. They have ME/CFS, and can only talk via text and in very small bits. This isn’t just a preference, it’s bad for their health to do more than that. Does anyone know of any psychiatrists or services (private or NHS) that might be good with accessibility? Or has anyone had any luck with this ? I’ve contacted a few and they’re not interested in giving it a go.

Hi, apologies, i’m not sure if this is appropriate for this sub -reddit. I’m a carer and my family member was advised to get a psychiatric assessment by a doctor, but they won’t assess them in a way that is accessible to their condition. They have ME/CFS, and can only talk via text and in very small bits. This isn’t just a preference, it’s bad for their health to do more than that. Does anyone know of any psychiatrists or services (private or NHS) that might be good with accessibility? Or has anyone had any luck with this ? I’ve contacted a few and they’re not interested in giving it a go.

(I thought i’d clarify incase there is any misinterpretation that the assessment is not happening because of any confusion regarding the physicality of ME/CFS, a person can have ME/CFS and also have mental health conditions as well, they can be two separate issues).

Hi, I’ve been researching this a bit and can’t seem to find a clear answer. (Which makes me believe that maybe it’s okay?). A family member of mine uses some of their UC/PIP to financially support another disabled person. They make a regular payments. These payments are not intended at all to keep the total capitol low, but it is a decent amount of money, if the payments continue it will be 6000 total over a whole year (spread out of course).
Is this legal? The person receiving the money definitely needs the money.

I’m thinking perhaps I should contact the DWP to inform them, and maybe I can provide some evidence that these are sort of charitable donations. Then at least they know and can tell us whether we need to stop or whether they just need to be aware of it because it might inform how much money they give the family member.
I don’t want them to mess with this family members benefits, we would not be able to go back through the process to reclaim due to their bad health.

If anyone does have any information it would be greatly appreciated, also apologies if I used the wrong flare, I’m not a regular on Reddit.

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Edit: just adding an edit, as I’ve noticed how I explained this has resulted in some confusion. When I refer to informing the DWP about these donations, this would be with the family members consent for me to do so. The goal isn’t to catch them out or get them in trouble, I’m trying to do the opposite. They want to know how they can do this safely and legally without it negatively impacting their claim.