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disability guilt

Discussion in 'General Support and Advice' started by europeanguy, May 2, 2021.

  1. europeanguy

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    I live my life with basically no connections. my family find me more of a burden then a gift if that makes sense, no one has ever made compromises for me or accepted me for who I am in this world, ive been constantly forced to hide my quirks and strange behaviors since I was a kid and fight for every scrap ive ever gotten so far at the risk of it all falling apart at any moment.

    I realise that from not having friends or a love life. why pick me? in a world of flavours why pick one of the crappiest ones when you could have any your heart desires? I will never, due to disability, be independent at least not fully, right now as nobody wants to help me I am suffering and living half a life and struggling to keep up basic things to live. If someone was to choose to date me they'd have to do so accepting that I will never be as clever, or strong or independent and savvy as "normal" people are. I cant communicate in a way that is pleasing and normal and engaging, holding a conversation is difficult for me and people dont seem to like talking to me. I struggle enormously with even basic tasks and need help in everything, im a huge burden.

    so its like, why when picking, would you pick the crappy pistachio and coconut flavour that is really kind of gross and is a chore to eat. when you could just as easily go have strawberry or chocolate or even vanilla? essentially, why choose a disabled person that you need to essentially care for and compromise for and come down to their level and learn to communicate with them, hell I can barely even hold a job because I struggle to cope and function how they'd like. when you could just as easily, if not even MORE easily, go date someone "normal" who is just like you and is good at talking, has loads of interests not just one singular obsession, can do everything for themselves with ease and generally just be a joy.

    I feel guilty that a guy might be into me somehow, and have to deal with me, and essentially help me just....live as a person. That I may always just be a burden and a drag down, surprising their ability to live and love and be happy by being crap. I dont understand how to feel about it, or if it'll ever truly happen but I dont want to hurt them like that.

    this was inspired by the short "loop", a great representation. it was magical be it made me think how hard the guy in it had to try to understand her and communicate with her, the bumps and difficulties along the way and the triumphs inbetween. I realised that even though nobody has ever wanted to do that for me, that the level of strain it'd take and personal sacrifice that it'd take, I can understand why no one in the real world seems to want to do it, and how hard that'd be for those that do, and I dont feel like I can foist that on some lovely man
     
  2. QuietPeace

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    Your command of written english is pretty good and that is a type of communication even if you have trouble in other areas.

    I like both pistachio and coconut. Vanilla is boring. I actively dislike strawberry. Everyone is different and there are people out there who might very well prefer your "flavor".

    I have a boyfriend and I have many issues including communication issues.

    I cannot hold down a job at all. Even when I was forced to try to hold down a job to support myself I was only able to work about half of the time, this over a twenty year period. Most of the nonworking time was spent searching for work but at least a year was actually spent in institutions because I was unable to care for myself. I was also declared legally incompetent for a period of time and taken care of by a spouse (long story).

    You have serious self esteem issues and I think that you could benefit from therapy. Someone who cares about you will not mind if you need a little help with things. A relationship is about people helping each other with what they can and providing what support that they can.
     
    #2 QuietPeace, May 2, 2021
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  3. Suitsme

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    Hello there :slight_smile:

    I read your post and understood every part of where you are coming from.

    Let me give you another perspective from another disabled person which is me.

    I have Ehlers Danlos Syndrome, scoliosis in my spine, cervical spondylitis, ruptured disks and arthritis in my spine, gut motility disorder/gastroparesis, migraines, weak ankles, joints that regularly dislocate and sublux, fibromyalgia and POTS syndrome. I use a mobility scooter, can’t do basic tasks without struggling and at the moment I’m spending most of my days in bed due to iron deficiency adding insult to injury.

    Im not independent at all and need a lot of support.

    However, I am loved, I am looked after and I’m not lonely. The people who help me from day to day do it because they want to. I love them and we get along.

    I also had a disabled friend (she was much older than me and passed over in 2006) but she was funny, had an awesome personality, displayed strength, was interesting to talk to and lifted people so high they loved to be around her. She had a husband who looked after her because he loved her and wanted to do so.

    Being disabled can make us feel like a burden, like a waste of time, like we shouldn’t be here, like we are the worst chocolate in the box etc etc etc but we have so many qualities that some able people don’t have. Empathy for one, an ability to understand others who have health issues, an ability to connect with people on a whole different level.

    My disability has knocked me for six since I had a very bad fall in 2015. My ability to live a normal life depreciated even more. I went through a very bad time with depression but I changed it all by focusing on music, by playing my keyboard whenever my body allowed me to for whatever little amount of time I could. I try and do whatever I can each day and if I can’t do anything then that’s ok. I have taken up art and I paint or draw whenever I can. I am a listening ear to my family or friends whenever they need to talk to someone. I’m there for them.

    I do get bad times with depression and anxiety. I also suffer from insomnia.

    But in the main I am ok and I allow myself to be loved. I love people with all my heart. Friends and family mean the world to me.

    We may be disabled but we are worthy of love in all ways.

    You’re not alone with your disability but you should never feel guilty for needing help and if someone chooses to love you and wants to be the person who helps you then that is a love above all loves. Accept it because you have so much to offer... and so much love to give.

    I wish you good days. :slight_smile:
     
    #3 Suitsme, May 2, 2021
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  4. europeanguy

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    thank you for sharing im glad you felt you could. I am sorry your life is that way but I also admire your strength in dealing with it.

    I just want to be as much of a benefit and joy as the partner would be for me, to make it equally as good, but im just so limited I feel like I could never be that. Ill always be screwing up and hurting people and dragging them down from a life they could have lived. if I loved them truly id let them go and be with someone who can make them happy and fulfilled instead who was fully capable of being their equal. I dont want to be alone forever god knows I have been for as long as i can remember but I also dont want to ruin someone like that
     
  5. QuietPeace

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    If you decide that you would rather spend the rest of your life alone that is entirely up to you. However, do not blame it on having disabilities or such things. It is your choice.

    There are plenty of severely disabled people who have life partners. People with zero mobility tied forever to a wheelchair who cannot even feed themselves. People with severe mental illnesses, I know this for certain because I have had partners and currently have one and he has to do a lot for me. People with intellectual disability. The list goes on. Deciding to not let someone share their life with yours will be your decision, or you could take a chance and let someone in and let them decide if it is worth it.

    As I suggested before, you need therapy for your self esteem problems.
     
  6. Suitsme

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    What makes you think you would hurt, screw them up, drag them down or ruin them? You don’t have to answer. I’m just curious as to your thoughts and trying to get a clearer picture.
     
  7. europeanguy

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    I dont have to answer but im gonna anyway cos I feel like it haha, what can I say im random.

    its because all the faults and disadvantages I have also affect those around me because im barely reliable and basically require their help to do things normal humans can do without thinking. that and I screw up basic conversations and miss social ques like storm troopers miss rebels. so then they will have to spend their entire life compensating for that and dragging me behind them as dead weight when they could be going with a normal person who doesnt need all that and enjoying a lot more fun and active life of living rather then a half carer half sexual partner hybrid who has to help someone else function like a human
     
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  8. Suitsme

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    You know it’s really not like how you perceive it to be.

    I have been married to a man for the past 31 years. I met him when I was 17 and he was 23. I always had health issues which went worse and worse but I was only diagnosed properly with my disability when I was 44. The man I married has spent a lot of his life in hospital waiting rooms, taking me here and there in search for answers and treatments for my horrible symptoms which over time have gone worse and worse until now I spend most days in bed, can’t even so much as pick up the vacuum cleaner, sometimes I need assistance to do personal tasks during POTS flares (because I can pass out in the shower) and as I age, my spinal issues are worsening, my gastroparesis is worsening and my EDS is worsening to a point where my ankles are weak, I fall, I need to lie down for most of the day due to my heart being affected. My joints dislocate and sublux, I get aura migraines that are prolonged and I lose my speech, I’m confused for hours not knowing what things are and having no understanding of written language. I get vertigo attacks ..... oh the list is endless. But does my husband want out? No! He loves me and literally does everything he can for me. He takes me out in the car, fixes my mobility scooter up for me when I need it (sometimes I’m ok to walk short distances say on a beach), makes sure I get fresh air etc etc. He gave up everything to look after me because that’s what love is. In return I make him laugh, my sense of humour is wicked, I do what I can, I’m there to talk with him, and I’m also there to enjoy watching what he does. He cycles, goes hill walking, brings me back loads of videos and photos and takes me on the walk with him as he explains each photograph and video along his journey. He loves doing that. He has a purpose in life. Making sure I’m happy. He gets a hell of a lot back because he is loved. We laugh as much as when we first met. He never feels like I am a burden to him and I certainly don’t feel like a burden. I paint and draw when I can, I play my keyboard when I can and I’m never bored. Yes I get depression and anxiety but I get through it. In my life I have (with help) achieved so much even though I am disabled. We don’t even have a conventional marriage any more as since I came out in 2008 we changed our relationship to best friends. He still doesn’t want anyone else and chooses to be with me.

    I’m 51 now but over the years I’ve done whatever I can with the abilities I’ve had just to help charities. Although I’m now very disabled, I can still help charities. I crochet and give my work away to charities for them to sell. I give my paintings too. I even make little crocheted items and painted rocks and leave them outside when I’m taken out so that people can find them and take them home. All this makes my husband happy, to see me making a little bit of difference to other people’s lives.

    I am in severe chronic pain and even though some days I can not do anything I make sure I do whatever little bit I can on good days.

    I have a friend who is also disabled and she is pretty much the same as me and we support each other and make each other laugh. She is much younger than me but we discovered years ago that there is more to ourselves than our disabilities. even if I’m lied flat on my back I will phone someone up who I think might need a chat. I can offer a listening ear and make them laugh if they need it.

    Please try and change how you perceive how you would negatively impact someone else’s life if you had a partner. Believe me, if you spoke to my hubby he’d tell you you’re wrong. He still has a good life and I don’t burden him in any way. Love is an amazing thing.

    Just look at how you communicate!! You have an amazing quality there. I can see already you have a sense of humour!!! You have so much to offer someone! They can still live a very good life whilst looking after you too. There are a lot of us who don’t lead “normal” lives but that doesn’t mean to say we aren’t capable of making someone feel loved and special. Someone could really love you if you allow them to do so :slight_smile:
     
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  9. Shadowsettler

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    Before I go into a 2-page inspirational rant [haha] what exactly is your disability? If I may ask... it will help me understand.

    I've been dealing with PTSD since I was 11 years old [since 1999] and I have been long-term disabled since then, up until recently. I could not hold a job for my life, no matter how hard I tried. With your disability, weather it be physical or mental, it is legitimate.

    My inability to function and work like a "normal" human being further fueled my suicidal ideations and completely destroyed my self-esteem and self worth. Other than "Maybe looks and having a useless talent" I was not worth a fuck to anyone, or so I thought. Being disabled is not something that dictates your worth. Also considering that I was not a paraplegic nor had a permanent mental disability meant that I felt even worse about it, considering my problem "could be fixed and mitigated" it deeply bothered me... "If a combat veteran with PTSD can hold a fucking job then why can't I"?? I learned that many of them could not...

    This haunted me for many years. I know of a couple where the man is a paraplegic from a motorcycle accident and his wife stayed with him. Of course he gets around all on his own, does most things with minimal help but that's also because he is physically capable of doing so but that does not mean that you are any worse. Ability doesn't equal worth. If you're unable to do certain things by yourself then that is not your fault. It ultimately comes down to how much people enjoy your company. Those make for the best relationships.

    Your parents sound terrible, calling you "a burden". I'm sorry if that sounds harsh but that is my opinion and I can be a bit abrasive... but that's how I feel about it. I'm sure you're not a burden for needed help with certain tasks. If you don't mind telling me what exactly is your disability and what do you require help for?
     
    #9 Shadowsettler, May 9, 2021 at 4:51 PM
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  10. Suitsme

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    PTSD is just as valid as any other mental or physical disability. I know of a man who has suffered terribly with PTSD and it has had a profound effect on his life. Disability is so multi faceted.

    You are so right when you say it ultimately comes down to how much people enjoy our company.

    I wish for good days for you.
     
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  11. Shadowsettler

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    Thank you and yes, PTSD is "legitimate" but it's also treatable, unlike a lot of permanent disabilities, which is why I felt so horrible about myself for a long time.
     
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  12. Suitsme

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    Ah I understand now sorry.

    Nevertheless, you are incredibly strong in dealing with this since you were 11. My friend’s PTSD waxes and wanes and is exacerbated by stressful situations. He suffers from insomnia, social phobia, anxiety and depression. I’d imagine yours would be not too dissimilar.

    We are all affected in different ways by the same disabilities. I know a lot with my own disabilities can hold down jobs, do their own housework etc etc. I had to take early retirement from my main job many years ago and that made me feel utterly useless at the time. It severely affected my mental health.

    It makes me think of those poor souls who suffer from agoraphobia. I have a cousin who has never left the house in over a decade. I guess you could also say this is treatable too but for some they struggle so badly with it.

    Anyway, I wish you as well as possible. Stay strong :slight_smile:
     
    #12 Suitsme, May 9, 2021 at 7:42 PM
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  13. europeanguy

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    what dont I have haha at this point im not surprised when it comes up.

    my parents id agree are terrible, they're insanely emotionally manipulative (using "you dont love me" as a way to get things) they dont care about my feelings or emotions and even call me a bastard and a narcassist or even niave for having them or expressing them (thus I keep them inside forever), I am nothing more then a constant disappointment who cant even come half way close to the level my younger sister can, she is their princess and pride and joy, I am their burden who they give so little thought about, they dont even know what to get me for a birthday because they dont know what I like, so I just get a bit of money or even just a happy birthday once in a while lol, quite the opposite to my sisters birthdays which are usually really fun and filled with stuff.

    disabilities wise where do I even begin.
    im very autistic, in a way that others pick up on almost immediatly, its never a surprise to anyone. and from that I struggle enormously to cope with the world I am one of those that have extremely overly sensitive senses and I shutdown with even mild provokation (which I then cant speak, and can barely think and wont stop shaking and staring into space). I find it very very difficult to read peoples emotions and body language and keeping up with social rules that all seem confusing and ever changing, and im socially outcast for that, most people find it a pain to have to talk to or even be around me and voice that opinion a lot, either that or they bully the crap out of me and tell me to kill myself.

    im also dyspraxic so I have motor function issues and unreadable hand writing and am extremely clumsy and inprecise, im very accident prone.

    I also have a chronic illness stemming from a birth defect internally which means im very very often extremely fatigued and have a very specialised diet of things i can and cannot eat at risk of being ill, and having to maintain blood sugar levels cos I dont absorb it much. without my stomach pacemaker id quite literally die slowly over time, id literally have months left to live before I wasted away and died (which I nearly did prior to getting it). So I cant go for very long walks or activities like that sorta thing and nap during the day for 2 or 3 hours at a time

    oh yes and bipolar as hell, I am very very prone to extreme episodes of cripplingly deep spirals and suicidal levels of depression where I lose the will to live or function, sometimes its every night, sometimes I get lucky and have a night off, and lots of times its all day until I fall asleep. and during those im very inconsolable and hard to reason with. and then theres the uncommon occasion where i become a hyperactive asshole who spends money and cant resist impulses and burns bridges with those around me cos I tend to end up talking my way into digging my own grave with people so to speak and even I dont know why im doing it whilst im doing it
     
  14. europeanguy

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    oh yeah I forgot to add that one, ive been told I may have severe PTSD from the hospital time that consumed my childhood and teenage years and the um emotional and mental abuse I suffered from my family and still suffer honestly so panic attacks abound! im 24/7 anxious and never rested
     
  15. europeanguy

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    I guess some people get a kick out of being depended on or helping others? that and maybe the addition of loving that persons personality must make quite a pair!

    my humour is my defence mechanism haha, though my family try to convince me its crap
     
    #15 europeanguy, May 12, 2021 at 5:34 PM
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  16. Suitsme

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    I too, use humour in the most absurd ways as a coping mechanism for a lot of things... mainly my chronic health issues. I think looking for the funny side to everything in life is what gets us through. :grin:
     
    #16 Suitsme, May 12, 2021 at 5:39 PM
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  17. europeanguy

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    haha knowing me as a person I constantly make jokes all the time which can wear people out I guess, but im a huge fan of puns and wordplay in general and jokes.

    I recently thought about it but my annoying habit of "parroting" what others say comes across as offensive/like im mocking them but its not. ill hear a word or phrase they say in their accent or their way,
     
  18. Shadowsettler

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    Hey, man, same here. Since 1999.

    I endured some Terrible violence because I was openly gay since I was 6 years old.

    PTSD is a legitimate illness, man but there is help for it. Trauma therapy absolutely changed my life but you have to commit fully to it.

    I am available to talk if you ever need to.
     
  19. europeanguy

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    Ive talked about stuff in regular therapy and some cognative behavioural till covid hit but it never solved any of my issues. though they do make for fun stories to make people uncomfortable just by describing how you've been in more physical pain than they can even imagine for days on end off and on for most of your life.

    at least now its just mental pain and the pain of living lol. I cant wait for the peace of the grave sometimes XD
     
  20. Shadowsettler

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    about the "autism and bipolar"... it's likely that you're simply suffering from severe PTSD.

    Doctors believed that I was bipolar for a long time. Later, we found out that diagnosis was wrong. PTSD mimics a lot of other mental illnesses. It's a pretty crazy disorder.

    i also belived that I was autistic at one point, for about a year... but found out later that I was not autistic: it was actually just my PTSD.

    It's a serious disorder and xan be misdiagnosed as many different things... it's pretty fucked up.