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An open letter to the people who bullied me

glitterygutsxglitterygutsx Posts: 23Member Courageous
edited July 16 in Guest blogs

Alannah-Jayne has had Crohn’s Disease for ten years and a permanent ileostomy for nearly four years. She also has a range of other chronic illnesses as well as anxiety, OCD, PTSD and depression. She has done a lot in the IBD and ostomy community to help raise awareness and provide support. This has included volunteering for numerous charities.

Since being chronically ill, I was bullied on social media by so called ‘friends’ and others who knew of me. It first started when I was seventeen, I began to get really unwell and lose a lot of weight. I was constantly running to the toilet and often would spends hours on it or be throwing up. Despite that, I tried to live my life like any other seventeen-year-old, going out at the weekend, house parties, that sort of things. It became apparent that my Facebook friends didn't like this and I got comments such as "you can't be that ill if you are going out" or "drinking alcohol will make you worse". I got the occasional "my mums’ friends’ cousin has it and she can work" and I also got a hard time for being ‘lazy’ due to being so unwell. I lost my job which was something I loved.

To those who bullied me, this is a letter to you:

During the treatment of steroids to try take down the inflammation in my bowel, I had a common side effect called moon face and it destroyed my confidence. On the outside I didn't let anyone know and carried on as normal as I could. Then you posted pictures on your Facebook using the moon face emoji while saying things like "here's my moon face lol" and laughing and joking about it as if I was a freak.

Many nights I spent crying to my mum asking her why I deserved this cruelty and why I had to endure the pain and suffering that I was going through. Until the age of twenty, I went through various chemotherapy drugs to try and attack my immune system, to stop it attacking my bowel and those hit me hard. I tried to go to college and get qualifications towards being a nurse, but the travelling and long hours spent on the toilet made it impossible for me. You told my tutors things like "she's just skipping class, she isn't even here" and when I had my first ever hospital admission, you said that I went on holiday and wrote horrible tweets about me not attending my classes.

Did you have to spend those agonising hours on the toilet sweating with the pain? Did you cry with the loss of my independence or feel the guilt of being a failure all at once? You didn't see me cry myself to sleep every single night in my hospital bed because I just wanted to be out of pain and at home. I wanted to stop living my life in any bathroom I could find. 


In 2015 I had emergency surgery to have my large bowel removed and an ileostomy formed, also known as a stoma. Two days prior to this, I found out that this was my only medical option left as all medications had failed and I was very, very ill. I cried with shock and fear of going under the knife, so to keep you updated I told you I had received some really bad news. At the time I didn't want to share what that was, but you all used this as an opportunity to upset both myself and my mum. We both received abuse and horrible things, you said I was doing it for attention and the rest I will not even repeat. Did you know one of my consultants came and sat with me that night whilst I cried, scared of what was to happen?

When I uploaded a picture on my Twitter of me sunbathing with my stoma bag out on display you said I had put you off your food. I don’t think able-bodied people realise the impact this has on us and I wonder if your ignorance will ever be changed?

From Alannah-Jayne

You can read more on Alannah- Jayne’s (Glitterygutsx) blog where she talks about autoimmune diseases, breaking stigmas and sharing people’s stories.

Have you ever experienced comments about your disability from people you believed were friends? What would you say in a letter to them?

Replies

  • PhilipPhilip Posts: 33Member Courageous
    When I worked for the DWP at Wearview House, Sunderland, I was bullied by two managers due to my physical and mental problems, it actually got that bad I made an attempt on my life, I was even getting timed when I went to the toilet eg, wher've you been, what were you doing, it shouldn't have taken this long. I was accused of threatening one manager with violence & when that happened I  role down in tears, cleared my desk & went sick till Ill Health Retirement, after a period sick, I felt better & decided I didn't want to retire, I told the manager & she went up in a blue flash & gave me a right bolliking. I mentioned this on Twitter & it turned out I wasn't the only one, I emailed the PM, Theresa May, she referred my email to HR about my concerns, they fobbed me off. It turns out that when the DWP, possibly other government departments are among the worst employers towards members of staff who have certain disabilities 
  • Richard_ScopeRichard_Scope Posts: 1,612Administrator Scope community team
    Hi @glitterygutsx ;
    Thanks for sharing what must be difficult memories and everything you do to raise awareness!
    Scope
    Specialist Information Officer - Cerebral Palsy
  • PhilipPhilip Posts: 33Member Courageous
    I'm just angry that they get away with it, it has knocked my confidence, I don't feel I could return to employment, even though I would love too
  • Connie00Connie00 Posts: 126Community champion Pioneering
    Wow all this is very insightful, thank you guys for sharing all this to many of us don't realize that illness is enough without the trolls putting in their two penarth in. 
  • AilsAils Posts: 567Community champion Pioneering
    Thank you @glitterygutsx and @Philip for sharing your experiences with us.  It is awful that you have been through so much at the hands of these monstrous bullies!  I can't imagine what it was like for either of you.  Your courage to fight back against these awful people and raise awareness for others is marvellous!  These people should never be allowed to get away with such cruelty!  
  • happy91happy91 Posts: 101Member Courageous
    Ignore these people. Ignorant, living in a fantasy world people where all they want to do is put you down because they want to feel good about themselves. It has nothing to do with you personally. It's all about them and making themselves feel good. All they'll ever have to feel good about themselves is your reaction. Don't waste your time on it. Do your research on narcissism. Rife in today's world. They like to target vulnerable people, the disabled and beautiful strong people simply because it makes them feel good. Ignore. I promise you it bothers them more than anything you could ever say. Live your life as though they never even existed. Pisses them off big time. They think they're important enough to warrant a reaction from you even thought they have 0 value and 0 empathy for you. Keep making the most of your life whatever it brings and be happy. These people can't feel happiness from being alive and doing the simple things which is why they need to get a reaction from you. You will literally starve them if you live giving them 0 credit and 0 reaction.
  • Adrian_ScopeAdrian_Scope Posts: 2,936Administrator Scope community team
    Fantastic blog @glitterygutsx. Thank you for writing it and I hope it's gone some way to helping you.
    Senior Online Community Officer
    Scope
  • okkkiamokkkiam Posts: 8Member - under moderation Listener
    I am with you!
    My support for you,you're really strong!
  • janice_in_wonderlandjanice_in_wonderland Posts: 259Member Pioneering
    Bullying has awful effect on ones health and well being

    I feel sorry for anyone who is on the receiving end 

    I’m still suffering due to a catalogue of mental cruelty & every time I try to step out of my comfort zone it highlights even more risk so I lead a v quiet isolated life now 

    I hope society inc dwp and gov realise how much people’s lives are affected by bullying both mentally and physically 

    Im set back in bed atm but ppl only see me when they think I look ok which most haven’t got a clue 

    Like most people suffering from invisible illness/disabilities we just want to stop being judged and not feel frowned upon during any remission periods if/however long they may last 

    <3 sending out positive healing vibes to all 

    wishing @glitterygutsx all the very best for a brighter future for all 
  • redchicken43redchicken43 Posts: 32Member Courageous
    Yes, it's sad to say that I have also experienced especially in my younger years that started at school really and to some extent has continued throughout my working career as well. Luckily, my condition is mild enough not to require much accommodation from employers, but because I walk very differently to a 'normal person' I have tended to find myself being 'excluded' from certain things largely due to a preconception of my condition and has also impacted my promotion prospects.

    That said I am a great believer in that if it doesn't kill you it will make you stronger, so always try to focus on the positive things in life. The workplace has changed considerably over the last 20 years or so that gives disabled people much more opportunities as you are less tied to a specific workspace. It's that initial step that employers have to overcome to see our potential and the breakdown of preconceptions.

    As for social media, there are always cruel people out there who will attach you, its not right but we live a society where there are very little repercussions for abusing people online and by posting things you are seen as being fair game. I would say forget them and as others have said and move on with your life. You've gone through so much in your life and by sharing your experiences is an inspiration to others.
  • debbiedo49debbiedo49 Posts: 2,837Member Disability Gamechanger
    @glitterygutsx thanks for sharing and you rock! You are beautiful inside and out. I don’t think I could be as strong as you. I have IBS and other health issues. I can’t eat before I go out and will often wait hours till I get home to eat as most of the time I need the loo if I do. My adrenalin kicks in and my body goes into fight of flight mode. I can manage it but it is very restricting day to day. I must always know where the loos are and how long I’m going to be out. 
    When I was in full time work  I used to go to the loo a lot and felt like a freak and thought people were talking about me. That was years ago. Now I’m in part time work I can manage it better as long as I plan ahead. 
    I hope that things are better for you health wise with the stoma and you can build your strength back up.  I think it’s fantastic that you are raising awareness this way and wish you all the best. 
    (I’m sure I’ve seen a campaign with stoma friendly swimwear somewhere online. Are you involved?)
    Anyway, people can be cruel especially when they are uninformed and that’s part of life. All you can do is provide the info and be yourself. 
    Take care Debbie x


    I am a fibrowarrior!
  • Littleminx54Littleminx54 Posts: 1Member Listener
    Hi I was bullied by my fellow pupils and a teacher at secondary school because I had severe Eczema then. The headmistress buried her head in the sand when j complained by saying "that does not happen in my school..you are making it up". This was backed up by other teachers. This teacher encouraged others in the class to make my life hell. I ended up thumping that teacher after 2 yrs of torture and walking out. I ended up at boarding school and never looked back. I went on to college and completed 6yrs at university and qualified as a nurse. If i had stayed at my original school I doubt I would be here writing this. My family didn't believe me and thought "I was being difficult ". I was vindicated eventually when that teacher was caught redheaded bullying other students. One being in a wheelchair...She would call this pupil really nasty,  derogatory words/labels. So there was Karma at last and some of the pupils who made my.life hell did apologise in later years. I'm not proud that I punched this teacher but I had bottled it up for so long and I snapped! No One gets,away with any discrimination now..even fellow nurses or managers..it has happened but I've fought back. 
  • veritercveriterc Posts: 154Community champion Pioneering
    It's not only 'friends' and colleagues that bully you - I was horrified to find it goes on from NHS nurse to patient.  Experiencing nasty side effects from cancer drugs, I took myself off to France to get problems sorted out.  French health system was so helpful I stupidly told nurses about this when I returned, expecting them to be interested.  They reacted by meeting me en masse to tell me my 'attitude' wasn't supportive of the hospital.  If it hadn't been for the Chaplain coming across me in floods of tears, and telling me they should be supporting me, etc. I would have stopped treatment.  I know all nurses aren't like that, but think a lot of bullying happens just because NHS staff are so over-worked it comes out in their work. And hospital Chaplains can be very supportive - not just for religious care. 
  • nannyknowsbestnannyknowsbest Posts: 2Member Connected
    What a tragically, brave letter to those who have lost the ability to empathise with the pain of others.
    I'm 66 now and had one bully - but one that was there for life - my father.
    At the age of 5, he sat me down and explained that, now I was 5, I was a "man" and had to find my own way in the world. Throughout my whole life, he kept up the unrelenting bullying. When I broke my back, had a massive fusion operation - that then failed, consigning me to massive pain relief and a wheelchair for life, his reaction was pitiful. Instead of helping, he barred me (and my wife) from any family "get togethers" and told everybody, including my children, that I was just "attention seeking" - even denying I'd ever had an operation on my spine!!. He invented things I had supposedly done, including setting up a "spoof" Facebook page where he would post up the most awful things (usually attacking him - or my business associates & customers), then show everybody what "I " had written. This bullying went on from the age of 5 until he eventually died when I was 64!! He even kept it up from the grave, leaving my 2 sisters £500k each - and "because of all the terrible things I'd said" (on the Facebook page HE ran), I got just £10.
    I know our stories are at different ends of life and from different people but, the effects of bullying is the same, no matter where it comes from.
    For me, it is just complete lack of understanding as to what possesses anyone to act like that against another human being. In my case, the one person on the planet that should have protected me!
    It leaves one feeling upset, useless and angry in equal measure. To react would be to lower yourself to their level, not to react makes one feel useless and impotent.
    Now my dad's gone, I feel he "got away with it" because mud sticks.
    My heart goes out to you. Nobody has the right to make your life even more difficult than it already is. It's already so damned unfair you've been stricken with this disease and you must think "why me"?
    With luck, your "trolls" will lose interest and find another victim to attack. I hope with all my heart that your condition will improve and you have a wonderful life.
    Stay strong - Paul
  • janice_in_wonderlandjanice_in_wonderland Posts: 259Member Pioneering
    I wonder when will zero tolerance come into effect? 
  • cccccc Posts: 7Member Connected
    I used to work in the civil service when i was diagnosed with crohn's disease.I was full time then but as time went on i had to go part time i was off sick a lot.But just when i was starting to get some sort of life back the bullying started at work.I used to write giros and was in a group of people who used to joke that i was in work that day and joked they had lost abet that i wouldn't be in.Of course it started as a joke but where i worked there were 2 other large offices with maybe 50 people in each one was income support and the other was unemployment benefit and every one of the clerks had to come into the giro room to get giros wrote.It didn't take long for this joke of commenting to me that i was in work or not sick or whatever they felt like saying to me that day and of course the room would erupt into laughter this happened about 60-100 times a day and the only person wasn't laughing was me.I wasn't well and trying to appear normal.It was awful one day i had had enough and i went into the canteen and got a cup of tea by myself and in my mind that was it i had to leave because it was either just go home and give up my job or throw myself in the river i couldn't see any other way out.I left that day and never put one foot back inside that door.it was the best thing i ever did my health especially my mental health improved no end..it sounds silly but when you are the one being bullied its hard to see a way out.
  • PhilipPhilip Posts: 33Member Courageous
    Do what I did, email the PM, that gets referred to HR, what was additional in your case, was that management allowed it to happen 
  • Chloe_ScopeChloe_Scope Posts: 3,857Administrator Scope community team
    Thank you everyone for sharing your stories and I'm sorry to hear you too have been affected by bullying. I hope sharing this helps a little :)
    Chloe
    Online Community Officer
  • Grumpy1954Grumpy1954 Posts: 44Member Courageous
    Such strong stories! Sadly there will always be people among us that can only make them selves feel big by belittling others - my brother in law does it, following and FB group I join purely to make nasty comments on my posts. He went too far on a family group recently and got a warning and told next time he will be banned from the group. he then let fly on his Timeline stating I should deal with it like a man, and post abuse, bile and foul language back - I asked him what was manly about doing that on a family group, no reply.. I've had this for years from him, but having been heavily bullied as a child (asthma, stocky, assumed fat, wore glasses, "funny" name) I figured out how to deal with it now.
  • redchicken43redchicken43 Posts: 32Member Courageous
    Have you ever asked him why he is doing this?? Just seems crazy that people should be so cruel?
  • Kathy_BramleyKathy_Bramley Posts: 132Member Courageous
    I don't know if it's lucky or not that I grew up before social media. I had eczema and nasal catarrh, possibly a slight hearing impairment, and was emotionally disregulated, clumsy, eccentric and quixotic, a spiky profile, cognitively, as per dyspraxia and autism, in my head a lot/dissociative, moved funny but didn't have CP,  assessed a lot but not quite diagnosed. And queer in other ways too. I was deliberately betrayed and systematically wound up to meltdown in elaborate schemes devised by "peers" - the kids in my village mostly but also socially aggressive bullying at high school on a regular basis. I was daily called m*ng, sp*z, people did that thing Trump did at journalist Serge Kovawlski and there was a week a small gang of kids found and followed me every break, calling me zombie. If I ever succeeded at sports, which physically and emotionally I needed and was one of two girls who did elective PE when we got to that stage, someone would throw a tantrum. Balls taken home because I won a tackle, legs whacked with hockey sticks. Pathetic really. 

    But I know that all of them must have had other stuff going on. And that I wasn't morally perfect. And that that doesn't justify any of it.

    But there's no such thing as throwing people away. We all matter to someone. Every suicide makes a ripple, every murder. Every death. Every life. Somehow. Thinking about this has been important. 

    Nowadays I eat trolls for breakfast. Or at least put my quixotry to good use in epic conversations that often win people over.

    Just because lightning strikes it doesn't make you deserving, it's just physics. Just because some group dynamic treats you like a thorn in the flesh it doesn't make it the whole truth forever or for you. Even if it has some truth for them. Being stronger than that is a quest in its own right.

    My political anger and politicisation helped me. 

    But the flipside especially in a school with many politically aware teachers who weren't sure how to help was an inspiration porn thing, transference, projection. I was told to go off and save the world anyway. Encouraged to want to be prime minister, to show them.
    I have much more sympathy with our leaders than politically I should do. And I see an inspiration porn and evolutionary psychology of phenomena in their selection: special roles for special people, priests and magicians and heroes.
    It's all very triggering anyway. I want a world without terms used to abuse. Really hard when my kids pick it up and use it against each other or me. And they're disabled too.   

    And the lefty friendly teachers and peers would use words like eccentric and quirky and say I was just me and that came over as devastating passive aggressive euphemism.

    I feel like I can trust nobody. Like I'm a big bag of doodoo but also special at the same time. And have an epic story a lot less priveleged than our current leaders. It's an odd place to be. But I think learning to tell the story well is one way to survive.. 


     
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • Grumpy1954Grumpy1954 Posts: 44Member Courageous
    Have you ever asked him why he is doing this?? Just seems crazy that people should be so cruel?
    If you mean my brother in law, not recently, I just get abuse back. . He seems to have an intense hatred for several things about me, I've been happily married to his sister for 20+ years while he cannot keep a relationship going, I'm content with my life and what I have, he never has been, always thought he "deserved" more. I served in the Armed Forces for 12 yrs, 6 as an NcO, he has no connection with the military but claims it. He seemed to think, whatever car I had, he had to get a better one, not realising I didn't care - oh, and when I had my military pension, he pleaded poverty and had hundreds, if not thousands of pounds "loans" that he never attempted to pay back. My hobby was restoring unloved classic cars, he asked me for one as a gift, I gave him an early Toyota Supra (his choice) he ragged it round the area showing off, then dumped it in someone's front garden with no fuel, a dead battery and 4 flat tyres and told them to contact me to get it moved. I have no real idea why.

  • redchicken43redchicken43 Posts: 32Member Courageous
    I think this all says more about him then you. Seems that you have made something of your life and views you with resentment. You should feel proud of yourself having overcome adversity as for him, well it maybe that he is a lost cause.
  • Kathy_BramleyKathy_Bramley Posts: 132Member Courageous
    None of it is about us. The potential for ableism sits in context, social attitudes. And maybe an unhealthy sense of ownership or competitive attachment to his sister.  It sounds like insecurity about status and maybe his own sanity or fitness have  morphed into a grotesque and bitter campaign. Some kind of schema, or set of schema, about his own performance that throws him into the mode of an angry child, fighting the idea of disablity as just equal part of the human condition, being overly consumed with the idea it's all about heirarchy, pecking order. As if he feels degraded. It's irrational. But then these things are. 

    You have no duty to fix or help him and you both or society yourself. But it would be good if someone did.

    There's a dehumanisation of disablity. That we degrade and threaten them, that they don't have to worry about how we feel. Sometimes also there's just a cause and effect toy thing going on, that they work out they can push buttons and so they do. It's rewarding because it's scary but they get to carry on feeling superior. 

     Lightening strikes are just physics, no matter how tempted people are to think last night's storm was about Boris Johnson and my paranoid brain has made a variety of self centered/anxious postulations. 

    Latterly one of my not so bad bullies admitted that they were as the village mob deliberately finding ways to wind me up and apologized. This was a huge relief in terms of confirming that it actually did happen. And I didn't have a strong sense of being rightfully able to say "well this was just disablity hate/bullying" even if it was how I tended to think about it. So anyway, this being the long postulated moment, responded with practiced magnanimity. Didn't mention disablity. Although I did note he was one of the other people who was easily wound up. And feel wrong about that since. But I did give my "loh well, lighetning  finds somewhere to strike, I know I could be annoying and confusing, we were just kids" spiel.

    He then did a complete U-turn as if I'd given him permission, and started to gleefully reminisce about glory days and how much fun it was, though admittedly not for me, he added. OMG. Lawdy. 

    I still don't think we should give up on the ableds, but blimey, cautionary tale! No surrender!!
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
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