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We want to hear from you: please tell us about your experience of the online community.

No Progress:Late 20s Adult; Female; Outcast; Not Developed; Insulting Quality Of Life;Failing

ResilientNeighbour7

Good evening,

Sorry to start another thread and if it is irrelevant to Scope Community guidelines but again I do somewhat feel that some of the topics are still related to health and disability and as such might hear from people who may resonate or support.

I could write paragraphs, and already have in personal journals, emails, letters, notes, other forms of documents digitally and by hand but I know people can't stand reading too much of other people's issues so I will keep it short as possible.
In addition to other problems mentioned, which I have sought help for, and the processes are taking too long but I am not giving up, there are certain recurrent/stubborn issues I am dealing with that I am not coping with as a 26 year old woman (legally that is a grown *rse adult) who happens to be tragically young looking, unattractive and undeveloped and one of the worst things about it is how I am treated in public! I pay my bills (albeit through debt, overdraft and financial hell), do things myself, I battle issues each day with no actual support other than the lovely support I have been getting from places like here on scope.

I KNOW this might seem like a pathetic discussion considering we have people with deafblindness, severe deformities, loss of limbs, and a multitude of worse-than-mine issues but still I don't believe it is fair to compare and that my concerns are valid to if I am to navigate this frightening world as a pointless speck.

I cannot recall any instances where I have been met with dignity whether from non professionals or professionals, males or females, youngsters or adults, ethnic minorities or English people, one to one or from a group.

You know my mother is useless (sorry to say, and I yes I am a terrible daughter ) and I am bitter that she even birthed me. She is now a widow, she was blinded as a child but no one knew how and both her parents are dead so no one to tell her, she was several health problems, she is uneducated and unskilled, and I had a very toxic relationship as here daighter and will never be ready to reunite, especially whilst I live in a planet where I see suhc provileged and polished relationships between family each day whilst Irot away ehre. I feel anger and embarassment about exisiting whilst my younger peers are driving, thriving, living thir best lives

I am flat, quite short, face never grew more than a child size, long limbs and if course the whole skin is diseased as mentioned perviouslh woth a horrific condition.

How I appear seems to be more important to these countless people than what I do.

I also don't understand my daily life limiting symptoms inc this horrid fatigue.
People younger than me are screwed on, focused, go go go, and still ahve the energfy forspare time, holidays, socialising , more than one job, work, world travel and all their activiites

I could not stay awake today (offered no work today either by the useless teaching agency) either and oas usual through pain, fatigue and shaking has to to nap which turned into more than 2 hrs (on top of already having slept night before)

Why have I always been in pain,fatigue, ugliness, disease and always mistreated despute best effort

And I have NO energy to discuss here about my other ongong problems at moment

But then i can#t help myself either because, you see, I'm not smart either, at all, and people ahve loudly verbalised things such as 'look at the state of her' , 'It's not like she;s attractive either; and even seemingly shrug-off-able comments have become embedded in my already damaged mind.
I cannot even drive, I hold no degree never mind a masters, I don't even have GCSES nor A Levels. I feel completely underdeveloped and I hate it.

I was very hesitant to post such a personal query (of many) because it only seems to concern me and I have not seen or heard of individuals describing these exact scenarious but it's obviously affecting me a lot and I think I am trying to establish whether there is anything I can affordably, legally, realistically do to look a certain way so in order to blend in to society?

Once again sorry in advance, if this personal concern (just one of many deeper concerns) has been a waste of your reading time but please know that any patronising responses such as 'pointless'' , ''deal with it', 'nobody cares' would not be appreciated.

I am really struggling to word what my actualy frustrations are; I had tried to include a bullet point list of just some of countless incidents in whihc I have been directly approached by kids and adult , mocking my appearance and I have had enough as it happened when I was at the bus stop yesterday too.

And trust me, this is amongst the least of my current concerns but I needed t
And I wonder do I have a developmental disability?

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Comments

SueHeath

wish i could just give you a big hug darling - i really hate to hear people talk about themselves like this - every one has a place in this world - this world would be a boring place if we were the same.x

ResilientNeighbour7

Sorry I am really struggling to type cohesively right now , especially through recurrent and worsened gum pain and ALL the other ongoing isues, but want to say that I am NOT only talking about superficial things here. The maltreatment I get really affects me mentally, physically, so
I even listen to podcasts, read blogs, watch youtube videos, read magazines and books, search the internet and more but know of no other 26 yr old adult this failed and now that my father is gone I feel even more anger! I burst into tears in Boots yesterday, pretended to speak on phone when actually I was praying to God, ended up blabbering to some woman in a craft stall in the ondoor

People, I have so much tidying to do in this flat as well. If you saw the state you would be shocked

I want to live ina tidy space but if any of you have chronic diseases you might understand that I get tired very quickly, am overwhelmed all the time, very real OCD (not just the silly fake condition that teenagers on buses like to pretend they have) makes it upsettign to deal with the mess that I unwillingly created, and U'm always falling behind, late, distressed.

Like tomorrow for example (with great difficult I mustered up the courage to book the appoitments - and if you have deep anxiety you will undertstand my self pat on the back there) to go to the opticians tomorow as during the crying epsides I snapped my only pair of glasses and the superglue is not sufficuent. But I mention this because you know, going to the local town centre for an ppointment should not take so much planning, preparation , prayer beforehand when others (normal people) manage so much in one day.

Of course in my discomfort I will have to walk t the bus stop, then get to town, go in the opticians, they will ask name, address etc for security reasons ans rhey 'll be close to my ugly, hairy,
I have noted most people in the twon are not wearing their masks anymore and I feel a pressure to also not wear it anymore but it has been my only form of hiding a little when outside. I don't find them confortable and would say I a exempt but have always worn them, I am also finding more and more that thes young opticians are frehs graduates in their early 20s ie younger than me and I just feel so inferior when youngsters are working respectable jobs and I am a UC claiming , irregularly working, entry level, unqualfiied, closer to 30s adult female with no knowedlge!

I feel like I should know, do , be , have, own and contribute much more but I do not !

I tried ti book an art therapist/counsellor but she charged a lot and I cannot afford that!
Are you a British adut, specifically a female in your late 20s who has failed in mlife and can relate to what I am sayin g and if so HOW do you cope? How do you improve? How do you thrive?

I hate saying I am suffering when I am sat indoors typing on a borrowed laptop with wifi and wrapped up in layers of clothes and a throws on a little broken folded chari with chushions to give me a less sore backside and I;ve eaten foods that I bought for myself from a supermarket and I even

I feel lonely. Generally I don't like people but courtesy of the one friend I do have in another town (who told me about my fathers passing) I have been able to utilise her Netflix account and watch shows or movies ;I watched Studio Ghibli's Kiki's Delivery Service) and do you know whart? I felt JEALOUS of a bloody animated 13 yr old character for her skills, freedom, independence , supportive family and the company of a talking cat!

ResilientNeighbour7

Thank you Teddy Bear and Sue . God bless you for answering a pointless stranger like me on a Friday evening and sorry if a notification has bothered you! I honestly do just need to rant so I appreciate the kindness. Weirdly sometimes just writing or typing it feels therapeutic and to have someone read and care means even more. I am both sorry and thankful.

ResilientNeighbour7

Oh and I am sorry I forgot to mention the positive thing which I am grateful for but also and mostly worried about. So if anyone has been reading my other posts you will know I am trying to move into full time employment for several reasons mainly I need the money for survival and do not want to rely on DWP anymore but now that I have been offered a bank health care assistant job for a home I zoom interview with on Wednesday, I am scared about how I will actually be treated and if I will cope once I start! Now, Ive asked for help from various GPs, am taking vitamin d and iron supplemented, continuing to force feed myself despute no appetite whatsoever, drinking plenty of water and trying to get outside at least 5/7 each week BUT I am still fatigued like you would not believe and one of my main concerns is say if I get offered an overnight shift or I am to just sit instead of any standing , walking , moving related duties and I fall asleep , this would be awful so how can I ensure I stay awake! And coffee /caffeine in general simply does not work for me, in fact wuite the opposite! Makes it worse! I just don't feel like a human/normal! Why is there so much wrong with me? I was gifted with sight, hearing, a beating heart, limbs, breath (no sense of smell but that's no big deal), I even have tried returning to a gym , I eat lots of fruit, I try to get up every few 30-45 minutes to stop falling asaleep but I still do! I am ehauste yet today I has do no work and have not actually been outside! ANyway , tis is all I feel able to type right no, I can feel the stiffening of my limbs and the clutter I am surrounded by isn;t gpig to magic itself clean so off I go shutting the laptop, and saying goodnight. Tomorrow WILL be a good day because I will endure good things happen, good people will be manifested, good things will be recognised, noted and appreciated, and I AMA GOOD PERSON WHO DESERVE A BETTER LIFE!

Ok that's all. Thank you, good night and have a BEAUTIFUL weekend my dear community friends!

SueHeath

morning - when you get back on the laptop darling, don't forget to have a good look around the sight or just let us know your here so we can say hello. You can rant as much as you like. x

Ross_Alumni

Hello @ResilientNeighbour7

Thank you so much for speaking so honestly about how you feel and what you are going through, it appears as though you are really struggling at the moment. I can absolutely guarantee you that you are worth so much, and your issues are not a burden at all to us, the online community is a safe space and your contributions are very much appreciated.

The community will be here to support you as much as possible, and you are always welcome to make a post whenever you feel like having a chat. Have you got any hobbies or interests that you could indulge in over this weekend to try and help you relax and feel a bit better?

I have sent you an email from community@scope.org.uk with further information, please feel free to give it a read and get back to us.

Danielle_2022

Good afternoon @ResilientNeighbour7,
I just wanted to join everyone else in hoping that the weekend has been brighter for you. I also want to reiterate that nothing about you or your story is a burden to anybody here and you're always more than welcome to shout into the void. There really is something very therapeutic about that, hey? I am so pleased to hear about the job interview -- that in itself is a fantastic achievement, whether or not it ends in employment. Please keep us updated with that and we'll do whatever we can to help you through the process of asking for accommodations, if you'd like.

Also, I know from personal experience that this can be difficult to believe, but even just surviving is enough. I'm so sorry that other people have continually been so mean about your looks. I have always believed that being conventionally attractive is overrated, anyway

. Academic achievements really don't mean anything, either. You articulate yourself so beautifully and you don't have anything to prove.

I hope that the manifestation has helped your heart to feel lighter

ResilientNeighbour7

Hi everyone,

How are you all? How has your day been? Feel free to share! I like to learn about how others spend their days and I think there are always little inspirations and lessons.

So sorry to be back here but I need to write briefly. I never seem to get a break from this BS but writing is one of my mechanisms and a pretend way of working . Having another really bad day from all angles.

One of the things was feeling the need to take myself to A&E for severe abdominal pains only to not be put forward for any investigations. I pleaded that they at least prescribe a short course of strong medications which they did but in terms of the support and
Then despite me calling and gettbg through to the Gas Housing team FROM THE HOSPITAL to cancel, on my return t flat not so long ago, I got the insulting (and not through letterbox either but slotted in side of door (wish I took a picture) and that makes me believe someone already went into the flat as I am not sure howit got there.

I feel very physically cold as usual, too much, even back in here with heating in high and many layers.

I just don't know how to manage it and really think the health care staff ought to do more.

I honestly would not wish this level of daily discomfort and unproductiveness upon anyone.

I had to keep sitting and even fell asleep through pain (after taking more painkiller bt no more than the stated and generic amount and it was only paracetamol nto anything strong like mefenamic acid)

I have been contacting all the organisations and your lovely staff have contacted me directly by email to ask about referalls to local council etc so thank you and please know i appreciate

Again I need to vent and having found a platform where real people answer and seem to care, understand and offer practical advice, means journaling messy scrawls on pieces of paper everyday is not enough.

In terms VICIOUS neighbours, I am stating with conviction that I am not moving!
Whenever I manage to get my phone recorder on - he makes not a peep! Otherwise he, screams, swears, laughs loudly, talks demeaningly on phone and to himself. I am sorry but especially on a day I am menstruating, alongside, existing pains and problems, I am saying with conviction again that I am not going to JUST DEAL WITH IT/ACCEPT IT/ PUT UP WITH IT!

I KNOW there are GOOD people and all of you on here have proven that to me, and those few kind, golden, open-minded souls I encounter every now and then, but honestly it still feels like the majority are targeting me and I am not coping even with mindfulness and mechanisms

I understand the idea of choosing your battles but how much can one person take?

I seem to have been dealt some twisted cards.

Anyway I have to TRY and work through tonns of ongoing and overdue tasks including some short course content, emails, personal admin etc and I just want ot say thank you dear people for your kindness.

May you have a wonderful weekend!

ResilientNeighbour7

Oh and sorry I just quickly read something on scope website about donations? I promise that when I am in a financially stable position I will definitely contribute a donation as you have all helped myself and others phenomenally and the work you do each day is important! Thank you

SueHeath

Hi @ResilientNeighbour7 so nice to hear from you, I wish i could write and express my feeling aswel as you do, sounds like you've had another bad Week darling, I am sure you will get friendship on this forum x

Danielle_2022

Morning @ResilientNeighbour7,
It's so good to get an update from you! I'm sorry that you're having such a difficult time, but it makes me happy to know that you have found some solace here. I'm also glad to see that you seem to have gotten some practical support from the forum. That's so important and you're never alone in it all. Have there been any positives at all over the last couple of days? Even the most seemingly insignificant things are nice to focus on in moments like this -- if you've had a particularly nice dinner or something like that. Baby steps. Take care and remember that you're worth so much more than the way other people treat you, too

Tori_Scope

How's your pain today @ResilientNeighbour7? I'm sorry to see that things have continued to be quite difficult for you.

How have things been with your neighbours over the past few days? Please remember that you should continue to try and report these incidents if you feel able to, as it helps them to build up a picture of the kind of trouble you're having.

ResilientNeighbour7

Sorry to report again,very briefly because really bad time thjs morning,and definitely unable to from bed due to stiffness &other symotoms and this morning but as I speak the noise harassment is happening ''F*** OFF YOU STUPID B****''. 'CHARLIE WHAT YA DOIN',? Bang, bang ,bang, loud radio
Gis alexa wemt
I cannot be calling police 247 and i dont want people here.
I am in a really tough health strugggle (with no support still, believe it or not) & not managing to maintain the flat so yes it is a mess.
Last night, late in night, my friend called and even though it was late and I dreaded the ne8ghbiur would make an issue out of it, which he has. I spoke as quietly as possibke of course and eveb my friend was like 'WHY are you whispering?

HOW can HIS and OTHER neighbours nor hear it, that is one thing I don't understand.

In all honesty, I am convinced he hates me and wants me gone.
I even spoke to a dwp work coach about it and how it affects my ability to work from home and overall days and she literally said 'he wants you gone, can you not just move?'.

She maybe meant well but I proceeded to telling her that it has taken a lot just to get the flat, that no I cannot move and no I should not haveto move and no I will not move

Symptoms today include full body weakness & that horrible sensationw here it feels like blood js boilibg then freezing intermittently im the bottom left backof my head (if ajyone jas a name for this; I don't think it's partaesthesia but i am struggling to coin or find a descriptive word when u type all my symotoms in searcg bar but basicallly it' s horrible and happening increasingly - and no these are not phantom symptoms, I am sure.)

Oh it's just a total mockery. One thjng doesn't resolve and another big issue get plonked on the pile of daily rubbish : ghosting from employers current and potential, illness, fatigue, weakness, pointless and unhelpful appointments after long waiting times, ugliness, hostility, isolation, failure, no progress, overdraft, debt (made app with shelter for fegt advice but its next month), umabkr to afford rent,applying for all jobs inc enhanced cleaning and the like daily, like and other **** I am not dealing with.

I am forcing myself up now and focusing the prayers, positive affirmations, patience, strategies to try and cope etc but my goodness am I tired beyond words.

In spite of my issues, I genuinely hope you each have a peaceful and productive Wednesday

Thank you

ResilientNeighbour7

That's the one thing I've still not done because I am scared but I really have nothing to lose.

ResilientNeighbour7

Thank you.

Danielle_2022

Hi @ResilientNeighbour7,
I wanted to echo all that @Teddybear12 has said. You deserve so much better and more than the treatment you have been dealing with so far. None of it is fair and it’s definitely something that needs to be sorted ASAP. I always tell myself that existing as a disabled person is beautiful and bold in itself, you know? You truly have done so many wonderful things by even just trying to get job interviews etc., I promise. It’s a tough process but you have so much to offer & I’m sorry that your neighbours are consistently making life harder. Going to your MP is a brilliant idea! You can also generally send them private messages on Facebook, if you have access to social media. But if you need any support in making it happen, please do let us know. We’re here for you

Autumn_Feeling

@ResilientNeighbour7 This discussion resonates with me.

I was diagnosed with a developmental condition called Kallmann Syndrome in my mid teens That was 25 years ago.

Basically, it’s a hormone deficiency. I need to top up my testosterone levels every day to keep my bones healthy, muscles developed and to look my age.

Without treatment I look a lot younger and have suffered the humiliation of other people’s confusion over my gender too.

I was in a weird place mentally before treatment. Very self conscious and unmotivated. It was like time had stopped for me. Everyone else was changing and growing up. I was bullied for my appearance too but it kinda stopped after treatment.

Life is easier nowadays but it’s not without issues. It’s hard to relate to others in a social/group setting. Sometimes it can be emotionally draining.

The symptoms of the condition are different for everyone. Some people have a sense of smell, and others have a weak sense of smell. Some people have none at all.

Some people take vitamin d supplements but I don’t. (Never been offered.) Some people have regular dexa bone scans but I’ve never needed to. There’s a risk of brittle bones on and off treatment. Although the risk is lower when you’re on treatment.

I still suffer from fatigue while on treatment too. Don’t like heavy lifting or walking around for long periods.

The comment about long arms reminded me of my condition. I think that’s related.

Sone people with KS are diagnosed later in life. (Ive heard about people in their 20s.) I have a lot of respect for them.

Danielle_2022

Hi there @Autumn_Feeling,
Thank-you so much for sharing your story. I’m so sorry that the world has consistently been so cruel. It’s unfair beyond words.

My experiences are different because I have Quadriplegic Cerebral Palsy and use a wheelchair, though it does mean that my body doesn’t look the same as everyone else’s. If you look at me from a certain angle, everything is kind of disproportionate and it’s something that I feel deeply insecure about, if I think about it for too long. Especially my legs. Because I don’t walk at all, they don’t have any muscle whatsoever. I also have a lot of body hair, which I’m not able to shave myself. I usually tend to hide my feet whenever possible because they are typically blue or purple & don’t stay in a natural or healthy position.

Still, I do my best to find a bit of beauty in myself every day. Even if it’s just “I helped someone today”, you know? All of those things are small and beautiful acts. We exist beautifully outside of the conventional and I choose to believe that’s a very powerful thing

PS: if you read, I’d love to recommend ‘A Face for Picasso: Coming of Age with Crouzon Syndrome’ by Ariel Henley

ResilientNeighbour7

Hi @Autumn_Feeling & @Danielle_2022. Thank you both for your really insightful & helpful contributions. I'm sorry to read of your difficulties but in awe of how strong,sympathetic and smart you both are.

The KS symptoms are definitely ones that match me however is a condition I've never heard of. Thank you for educating me. I will do further research and maybe consult with a GP about it.

@Teddybear12 I've finally emailed a general enquiry my Local MP and will wait to hear back from their office.

There's much further I'd love to share however since Thursday I've developed full on cold symptoms,missed a video interview yesterday, getting no tasks done & feeling AWFUL to say the least! Took rapid home tests but according to the results it's not covid. Genuinely wouldn't wish this on anyone but hopefully this too shall pass.

LCB1012

Morning @ResliantNeighbour7 .

I know it's difficult, but please try to stop comparing yourself to others. They aren't in your skin, they can't feel what you feel, they don't have your struggles. As someone (sorry, I can't remember who) has said already, conventional beauty is overrated. In the effort to look like supermodels, a lot of women have turned themselves into Barbie Doll clones, with over-inflated lips and chests - now that's ugly. It's ugly because deep down, these women are so unhappy with their own appearance that they think beauty lies in needles and scalpels and layers of makeup.

You are real.
You are unique.
You are beautiful just the way you are.

I saw a meme on FB once, and the caption went like this: "Everyone is intelligent in their own way, but if you judge a fish by its ability to climb a tree, it'll forever think it's stupid." I believe it was Einstein that said that.

As for fatigue. Oh man, I get that! I get that only too well.

I don't know about you, but my skin often wakes me up more than once during the night, so I'm often left sleep deprived and exhausted the next day. This can play merry heck with your mental health and can make you feel like you're losing your mind. So if I need to go back to bed and have a nap, I do. No excuses, no apologies, no trying to stay awake when my body's crying out for sleep, just, "I'm knackered. I'm going back to bed." (Mind, if I have a nap and am still exhausted when I wake up, I start thinking if there's something missing - am I hydrated enough, have I had my multivitamin to cover any deficiencies in my diet, have I had enough fruit and veg?, etc)

PS: Does anyone know how to get rid of quotes?