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21st Oct: Have you had an illness that is misunderstood by other people? watch

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    On this week’s Surgery, Gemma and Dr Radha are talking about illnesses that are often misunderstood. Do you have an illness that people have a stigma or idea about that is totally wrong? Or do you have a friend or family member that has been treated in a certain way that they didn’t need to because of an illness they have?

    Letus know your stories and thoughts in the comments below!

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    OCD and anxiety. So many people think that when you say you have anxiety problems, it just means you are shy and nothing more. That really annoys me. I am anything but shy. Social anxiety is just one kind of anxiety disorder but people seem to think that's the be all and end all of anxiety. My anxiety came out as extreme panic attacks and agoraphobia. I've found people are quite understanding when it comes to panic attacks though a lot of people don't understand that panic disorder is actually an anxiety disorder. They think its something totally different.

    A lot of people seem to think that if you have a panic attack, you know for sure it won't harm you therefore it shouldn't care you and you should be able to ignore it. For some people who have the odd panic, that might work but when you have full blown panic disorder its not that easy. You live in constant fear about your next attack and you change your life dramatically to avoid one, hence I became housebound and agoraphobic.

    OCD is the biggest one though that's misunderstood. So many people are ignorant to this illness and think its something we all have to a certain extent. Yes, we are all very particular in our ways over some things but that doesn't mean we have OCD. There's such a big difference between being particular and set in their ways and suffering from OCD. I didn't come clean that I had OCD for years because I couldn't be bothered hearing all the misconceptions you hear and how much people have bought into them when it was affecting my life greatly. I lost 1 stone in a very short time because of it, wasn't eating for fear I had been drugged or poisoned though in knew I hadn't, my panic attacks were awful and at my worst, was suicidal and to have to explain my problem to people over and over who didn't fully accept what the condition was, I just couldn't be bothered but I decided I had to be open and get the facts out there. So many people think all OCD is, is you just wash your hands a lot. They can't understand that it's not just something you do willy nilly, it takes over your life. Its like it possesses you into doing whatever your compulsion is just to find some short lived peace. The obsession with OCD can't be shut off no matter how illogical and far fetched you know it to be. I have found that logic doesn't help with OCD. It helps with panic attacks but not OCD. I feel like you have to wait for your mind to catch up with logic on its own when it comes to OCD. The more you force yourself to see the truth, the longer it takes and the stronger the obsession grows.

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    (Original post by Spock's Socks)
    OCD and anxiety. So many people think that when you say you have anxiety problems, it just means you are shy and nothing more. That really annoys me. I am anything but shy. Social anxiety is just one kind of anxiety disorder but people seem to think that's the be all and end all of anxiety. My anxiety came out as extreme panic attacks and agoraphobia. I've found people are quite understanding when it comes to panic attacks though a lot of people don't understand that panic disorder is actually an anxiety disorder. They think its something totally different.
    I once had someone (someone who really should know better) tell me I have anxiety because I am rather shy plus have a few other issues. I'm not going to pretend I know a lot about anxiety; because I don't. But I know I don't have it.

    I'm not going to add anything more about OCD, because I think you've said it much better than what I could have written. Mine for the most part is under control. That is, until I get into really stressful situations. At which point, it does flare up.

    I have Autism. There are a ridiculous amount of misunderstandings by people. I was once told I don't have it and it's anxiety I have because "I think my dad has it and you're nothing like him". It's a spectrum. I'm a female and males and females are different. There seems to be a lot of assumption that because someone is classed as "high functioning", they don't have any problems. This isn't the case at all. I, for example, had to leave a group a few years ago because of the amount of people there. I, according to a friend of mine, have a lot of issues with communicating. I didn't realise until he pointed it (ok, I am aware I have a few issues) out to me. He learnt the hard way that he has to be careful in the way that he says things to me because I have been known to take them completely the wrong way. Another misunderstanding seems to be that it's a child's problem and by the time you're an adult, you've either grown out of it or learnt to be adapt. I don't know of anyone for whom this is true for. I, for example, still have the habit of not being 100% honest and pretending that the lack of routine is fine when it's not. I now can't go away next year because I think my friend is rather concerned (and so am I, tbh) that we're going to have a repeat of this year.

    I have a condition called Nystagmus which affects my vision and balance. I was told by someone years ago that it should only affect my confidence. I wish! I had to give up reading print because it takes so much effort to sit there and read. I get so tired after 5-10 minutes trying to read. I've had people tell me they understand how I feel when it comes to tiredness. You don't. There's a huge differentce between being tired after 8 hours of working and 5-10 minutes of reading (or trying) large print. Walking around can get rather interesting at times. My eyes wobble and in order to stop them, I've got to tilt my head, which can seriously affect my balance. Stairs are a right pain in the arse to walk down too because of my lack of depth perception.
    • #1
    #1

    Aquagenic pruritus. Intense itching caused by contact with water or something damp or even humid weather.

    There's nothing to see and when you seek medical help many doctors just say "Don't be silly, you can't be allergic to water".
    • #2
    #2

    I have misophonia (a neurological disorder causing hypersensitivity to specific noises), and I get scared to tell others about it in case they get the impression that I'm just being dramatic. I can't go anywhere without headphones because hearing certain every day noises (such as a stranger coughing on the bus) make me feel like screaming. It causes physical discomfort and I start to panic as well as feeling really irrationally angry and upset. It's generally unheard of (my doctor initially had never heard of it but only concluded that I was suffering from it after doing some research). I keep making excuses not to go out (for example to the cinema) because I know I will be constantly on edge and reacting to the noises; the last time I went to the theatre I left in tears because the man next to me wouldn't stop sniffing. It feels ridiculous to try and explain it to people so I just tell them I get claustrophobic in busy spaces if they notice me acting strangely, as the last time I tried to explain it to a friend she said that nobody thought those sounds were pleasant, that it wasn't unusual for me to dislike them, It's impossible to communicate how drastic the symptoms are and the effects it has on my day to day life.
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    I developed psychosis whilst at Oxbridge and ended up
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    trying to drown myself
    in the middle of my Finals. This had a knock-on effect on my other exams, two of which I walked out of without finishing.

    Instead of writing something like "TLG began hearing voices in her exam and had to leave" on the report to the examiners/the Powers That Be at Oxbridge, my college wrote "TLG had a panic attack and had to leave". No I didn't, don't dismiss or degrade my experience by choosing to list what happened as a completely different situation to what actually happened. Just coz you can't see it happening doesn't mean i'm not hearing voices.

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    It's not an illness, but I have dyspraxia.

    It means that I struggle with coordination and organisation. A tiny word for a big effect on my life.

    I can't write for more than a few minutes without pain. I also can't write neatly or quickly. I was missed in school so I got no support until I was 15, after I was diagnosed by chance.

    I struggle a lot with making notes, but most teachers seem to think that I can. I get no benefit from writing notes. For me, it's just an exercise in copying down random symbols. But I can't keep up no matter how hard I try, when for most people it's effortless. I ask for PowerPoints to be printed out before the lesson so I can just follow what's going on, but 90% of the time that doesn't happen.

    I use a laptop to help me, but I get a lot of questions about why I need one. Most people have never heard of dyspraxia, and even as I type, spellcheck doesn't recognise it as a word. This means that I get a lot of misunderstanding about what it means. I also get comments about how I'm "making it up" or exaggerating my difficulties.

    I think that because people can't see that I'm different, they think that I'm not. They think I'm just lazy and stupid because I can't do everything as quickly as most people. Or I'll lose something after only having it for two minutes. Or I'll fall over my own feet.

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    (Original post by Anonymous)
    I have misophonia (a neurological disorder causing hypersensitivity to specific noises), and I get scared to tell others about it in case they get the impression that I'm just being dramatic. I can't go anywhere without headphones because hearing certain every day noises (such as a stranger coughing on the bus) make me feel like screaming. It causes physical discomfort and I start to panic as well as feeling really irrationally angry and upset. It's generally unheard of (my doctor initially had never heard of it but only concluded that I was suffering from it after doing some research). I keep making excuses not to go out (for example to the cinema) because I know I will be constantly on edge and reacting to the noises; the last time I went to the theatre I left in tears because the man next to me wouldn't stop sniffing. It feels ridiculous to try and explain it to people so I just tell them I get claustrophobic in busy spaces if they notice me acting strangely, as the last time I tried to explain it to a friend she said that nobody thought those sounds were pleasant, that it wasn't unusual for me to dislike them, It's impossible to communicate how drastic the symptoms are and the effects it has on my day to day life.
    I have similar issues. Even Audiology don't understand. Apparently, I should just wear ear plugs. According to the letter from Neurology, (how right that is, I don't know) I have Hyperacusis (hypersensitivity to noise) and Phonophobia. The latter is similar to Monophobia; but it's more than one noise, I think.
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    (Original post by Katty3)
    It's not an illness, but I have dyspraxia.

    It means that I struggle with coordination and organisation. A tiny word for a big effect on my life.

    I can't write for more than a few minutes without pain. I also can't write neatly or quickly. I was missed in school so I got no support until I was 15, after I was diagnosed by chance.

    I struggle a lot with making notes, but most teachers seem to think that I can. I get no benefit from writing notes. For me, it's just an exercise in copying down random symbols. But I can't keep up no matter how hard I try, when for most people it's effortless. I ask for PowerPoints to be printed out before the lesson so I can just follow what's going on, but 90% of the time that doesn't happen.

    I use a laptop to help me, but I get a lot of questions about why I need one. Most people have never heard of dyspraxia, and even as I type, spellcheck doesn't recognise it as a word. This means that I get a lot of misunderstanding about what it means. I also get comments about how I'm "making it up" or exaggerating my difficulties.

    I think that because people can't see that I'm different, they think that I'm not. They think I'm just lazy and stupid because I can't do everything as quickly as most people. Or I'll lose something after only having it for two minutes. Or I'll fall over my own feet.

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    Sorry to hear you've had such a difficulty in getting diagnosed and having unsupportive people round you in school (reminds me of what school was like for me and why i'm glad its well behind me now, the education system before university really doesnt fit the way we learn differently in my opinion).
    I have mild dyspraxia myself and starting university it's gotten a lot better (in the sense that people are much more positive now and lecturers understand what it is and i ve found people willing to listen if I teach them what dyspraxia is and i have i guess accepted me for me a lot more so work to my strengths ).
    It does and can get better in time so hang in there and don't listen to those negative people because they are wrong about you and you can and will prove them wrong. If you ever want a chat to a fellow dyspraxic person, drop me a message anytime
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    I have bipolar type 2, and the amount of people who say they're the same because they have occasional mood swings is unreal! Best way to catch them out is ask which type they have.. If they say "idk just the normal type" you know you've got a faker
    A lot of people just seem to think it's a less severe case of depression, like it's depression but only sometimes. Ha, no. -.-


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    Nothing as chronic as what some people have mentioned but when I was in year 10 or 11 I had a really bad eye infection & had to wear a plaster over my eye for a while. Someone started a rumour that I didn't actually need it & was only wearing it to seek attention, which meant I had to put up with a lot of strange looks & stupid questions. One day I'd come back inside from break, it was raining outside & my plaster was coming off because it was soaked. I'd gone to my locker to get a fresh plaster to stick over my eye & I had a few kids crowding round me. They saw the state of my eye, how red & sore it was & were pretty shocked to actually see it- I didn't get anyone accusing me of attention seeking after that.
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    Thanks to those that have shared their stories so far.

    Just remember you can post anonymously in this thread.
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    Yeah, Ehlers-Danlos type 3. People think I'm being lazy when I'm unable to move, it's not that I'm being lazy it's because I'm in too much pain physically to do anything and also too fatigued. Even get remarks from my family. People think that just because I'm not in a wheelchair I don't have a physical disability.

    Also, the mental health issues I have get misunderstood a lot. "You can't have post-traumatic stress disorder, you haven't been in the army"...erm, what? :erm: Or that I don't have depression or anxiety because I'm able to smile.

    Invisible illnesses get misunderstood, A LOT. And it makes me so angry, because it means we have to deal with the illness and the stupid remarks from ignorant people.
    • #3
    #3

    I've always been a happy, bright & bubbly, cheerful person to be around with a 'life can't take me down' attitude and I've always got time for people who ask for it, part of the reason I became a teacher, but a few years back I had a particularly hard time of things and came down with depression, but I never went to see anybody about it and I dealt with it myself (yes, it can be done!).

    In my day-to-day, I kept this outgoing look of me still being me with my usual happy go lucky attitude, but when I came home, days just merged together, I couldn't even find playing games or my guitar interesting or enjoyable and I would just wake up the next morning with very recollection of me actually doing anything the night before other than have some dinner, No drugs, no alcohol, literally just passing time doing nothing and waking up in the morning thinking 'Wow, it's time to put my other face on again'.

    The only people who even noticed that something MIGHT have been wrong were my parents, but (thankfully for me!) they just kept things going as normal and let me work it out myself. Eventually I figured out what I needed to do in order to overcome it and I did, despite a few odd days here and there which still occur, and one thing I'm immensely proud of (for want of a better expression) is that I dealt with it all by myself, not needing to ask anyone for help, talk to anyone, go and see a doctor, anything. (NB - I'm not saying this will work for everyone, depression isn't a 'one solution fixes all' kind of thing).

    The stigma that comes across now is that when I began telling people about it (when people ask about things associated with it) is that they sometimes treat me like I'm about to break or fall apart in front of them, or that they say something along the lines of 'But you're so happy all the time, there's no way you can have depression!' They know the kind of person I am and that I can take anything that gets thrown at me with a grin, but when people who know me really well find out I was depressed they treat me like I should be wrapped in cotton wool! Just treat me like the same old me I was before you found out! Yeah, I've been through some tough stuff, and did you notice anything different during that time? Now it's over, I'm the better for it, so you punch me in the arm and take the mickey out of me like you used to, don't think I'm suddenly made of glass! Come to me with the same problems you used to ask me for help for, don't think 'He's got enough on his plate with everything he's been through!'.Yeah, it was (and still is a little bit) rubbish when I had it, but for God's sake, I'm still the same me I always was! Treat me that way!
    • #4
    #4

    Hi,

    Yeah, both Physical and Mental

    Physical - I'm suffering from chronic spinal issues, which has no underlying cause or diagnosis. I'm often put down because of it, because I'm being thrown around left right and centre for anywhere that can get me out of any pain. As well, I don't know my limits, what I can/can't do, and often people misunderstand it for an illness/ contagious / short term thing

    Mental - Depression - Since a huge outbreak argument in my family, I've had frequent panic attacks and crying all the time. My parents' don't understand mental health at all, and I'm just disregarded as weak, or attention seeking. It's my parents wo are the worst at that, my friends are really helpful. I almost had a panic attack once and my parents told me I'd never get better if I didn't even try... That's why I've worked out I can only deal with things myself - I tried to confide in people and it just made everything worse, and my parents wont change so they'll always misunderstand what's going on in my life.
    • #5
    #5

    Depression.

    I hate when someone will watch their team lose in rugby or football and say 'i'm so depressed'. Cause they're not.

    Depression is so much more than feeling a little sad at something and it's cause of that I haven't and probably won't tell anyone my age that I have it.
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    I have an underactive thyroid.

    A lot of people reading that will just think "oh, it makes you put on weight", and other people will think "actually, it doesn't make you put on weight, but people just use it as an excuse". But for a lot of people, and unfortunately I'm one of them, it has worse symptoms.

    When I was initially diagnosed, I had been misdiagnosed as suffering from depression and psychosis. Because, as some people on TSR will already know, at one point I thought I was God, and another time I saw Jesus in my fridge. I'm not religious at all, and they weren't all religious things - at one point I could only eat white/beige food, and I spent hours watching the dishwasher because I thought it was going to eat me. The psychosis was exacerbated by the anti-depressants I was given (I'm also hypersensitive to SSRIs), but the underlying cause was just my thyroid.

    I was very lucky in that I was seen by a CPN who insisted on me getting a blood test, which revealed that my levels of thyroid hormones were very low. I saw loads of other health professionals who insisted it was just mental health issues of varying descriptions, and whilst it could have been, that was just the symptom of my other problems. I'm now on Levothyroxine and am fine. If I miss any doses I do have hallucinations, though - for a while I saw black mice everywhere.
    • #6
    #6

    I have high-functioning autism (aspergers) and ADHD, they're not actually illnesses but they are medical conditions.

    People have always thought I was weird because my autism has turned the social communication and certain hormonal response parts of my brain into what you could call a couple of extra CPU cores. I use these parts of my brain for processing information, which has made me extremely nerdy and also a social reject.

    Before people knew about my autism they just used to bully me, which just made me spend more time studying and obsessing over science. But when they found out things got worse. Other kids started disappearing from my classes and no one would acknowledge my existence (they would even go as far as trying to walk and look through me). I later found out that the disappearances were caused by very ignorant and bigoted parents who believed that autism is an infectious disease which would turn their kids into vegetables. It was a private school, and most of the parents were pretty arrogant so they'd march into the head teachers office and demand that their kid be taken out of all of the classes which I was in. Their reasons were some of the most ridiculous things I've ever heard - "my child will catch autism and have an IQ of 0," "my child's too important to be anywhere near an autistic person" and "the autistic girl is a bad influence on my child, she'll make him/her grow up to be a hoodlum" were some of the many stupid reasons.

    Still though, it gave me a good laugh. Karma hit them hard too, this year was the school's worst ever year for AS grades with most of the yeargroup averaging U-D's.
 
 
 
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