PIP, DLA and AA
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Fluctuating symptoms - invisible illnesses

janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
edited March 2018 in PIP, DLA and AA
Do you suffer from fluctuating symptoms? 

Do you feel worried you're always being judged for putting on a brave front? 

I can imagine this worry causes concern to so many as they appear to 'look fit' on the outside where as nobody has a clue how anyone is truly feeling or what is going on inside anyone's mind and body 

Also, some people grew up learning to hide illnesses out of fear despite stigmas changing in current society hence 'invisible illness' awareness so it's part of their nature to hide symptoms 

How can anyone ever feel confident suffering from fluctuating symptoms mentally or physically whilst feeling constantly judged and regularly reviewed however often that maybe 

Escaping from symptoms helps people to keep going... nobody wants to talk or listen about ill health all the time so hiding symptoms is understandable 

Are you affected by this at all? 

Replies

  • WaylayWaylay Member Posts: 922 Pioneering
  • NystagmiteNystagmite Member Posts: 609 Pioneering
    Yes!

    And it was certainly the way at my PIP assessment.
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    I think if you grow up with a problem you learn to manage. So by the time pip comes along you can do the things they ask you.

    It says fluctuating on my report but everything looked on on that day at that time. It doesn't mean it did the night before, which it wasn't. 
    Do not follow me, I don't know where I am going.
  • janejrjanejr Member Posts: 142 Pioneering
    I'm sure my neighbors think I'm a fake. Sometimes I limp to the left sometimes on the right. There are days I walk at a snails pace and days when I'm a little quicker. Days when I need help getting in or out of the car, lifting my legs manually in to the foot well. They don't see me often especially in the winter. I don't care much though I know I'm ill they can't see my damaged joints or my depression due to the pain
  • charlenecharlene Member Posts: 555 Pioneering
    I was born with one of my conditions. This I   thought was normal until my late teens, when I realised people did't do what I did.

    it was easier to manage when I was younger, now a thorn in my side.
    When the going gets tough, the tough get going.
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    Your comments are the reason why I felt it was right to submit this post as I'm sure it's what many are experiencing 

    Nobody sees me when I can't walk talk or even type yet I muster up the strength and make an effort to look and feel better when I can but unless anyone REALLY gets to know me properly by spending time with me every day then they haven't got a clue - even long term friends I rarely see are unaware of the catalogue of symptoms 

    I'm relieved ppl can communicate here to feel less isolated 

    keep on keeping on everyone ;-) 
  • GizmoTiddlesGizmoTiddles Member Posts: 129 Pioneering
    Do you suffer from fluctuating symptoms? 

    Do you feel worried you're always being judged for putting on a brave front? 

    I can imagine this worry causes concern to so many as they appear to 'look fit' on the outside where as nobody has a clue how anyone is truly feeling or what is going on inside anyone's mind and body 

    Also, some people grew up learning to hide illnesses out of fear despite stigmas changing in current society hence 'invisible illness' awareness so it's part of their nature to hide symptoms 

    How can anyone ever feel confident suffering from fluctuating symptoms mentally or physically whilst feeling constantly judged and regularly reviewed however often that maybe 

    Escaping from symptoms helps people to keep going... nobody wants to talk or listen about ill health all the time so hiding symptoms is understandable 

    Are you affected by this at all? 

  • GizmoTiddlesGizmoTiddles Member Posts: 129 Pioneering
    Most definitely especially when people comment" but you can ride a motorcycle "
    I normally say I'll willingly give you the bike BUT you take my pain with you as well.
    Bike now gone due to a spill ,ouch!
    Gizmo
  • JurphJurph Member Posts: 346 Pioneering
    Yes! Oh, yes!

    It's so hard to explain to anyone that hasn't experienced it themselves. I only go out on my good days so that's all people see. The assumption is that I must be lazy the rest of the time.

    My PIP assessor saw me on a good day, therefore I'm perfectly fine. As someone on here once said - "you can grip a cup, therefore you can fly a 747"
  • NystagmiteNystagmite Member Posts: 609 Pioneering
    whistles said:
    I think if you grow up with a problem you learn to manage. So by the time pip comes along you can do the things they ask you.
    To some extent, this is very true. I have learnt how to do many things as I was born with some of the conditions I have. But there are some things I couldn't do as a teenager safely that I will never be able to do. And there are some things (not age related; condition related) that are just getting harder the older I get.
  • JurphJurph Member Posts: 346 Pioneering
    @whistles it was a good one. Very accurate. 

    I'm very similar. Only my parents know about my illnesses and what I'm trying to claim. I haven't told any other family. It was them I was referencing. 

    I think disabilities can be invisible (deafness and blindness for example can't be seen). But I too would class myself as having illnesses as opposed to disabilities. 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    We all learn to hide things, we don’t want to bother anyone with our physical or mental health problems.
    i kept things in for so long I couldn’t stop trying anymore.
    i did call nhs24 on several occasions and helplines to be told go see your doctor. Did that and told “ get out more”.
    ended up fighting for my life.
    Still fighting today, to get through the day and the people who make us feel we don’t need there financial help. 
    We just need understanding 
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    What do you prefer people to say?
    Symptoms
    Illnesses 
    Conditions 
    Diseases/Dis-ease
    Disability/Disabled 

    Whatever people say it ought to be out of respect but society can be pretty ignorant and cruel at times 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    I really don’t know, I say,

    this thing!!

    I don’t actually talk to anyone about it that doesn’t know already.
     Your right people can be cruel and rude, if my twitching is bad people blatantly stare, I would say, is there something wrong, but usually my speech goes too.

    its frustrating 
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    I actually only say if prompted. 
    Probably would day condition because it's variable, fluctuating.

    I do have a sense of humour and will add I'm just one big side effect.

    I have to say since doing all these forms I am noticing more people and wondering if they are in the process to.
    There can't be many that haven't changed over, by that I mean last few thousand?
    Do not follow me, I don't know where I am going.
  • WaylayWaylay Member Posts: 922 Pioneering
    I tell new people in my life because my conditions are very unpredictable, so I often have to cancel plans at short notice.

    I write about my chronic pain and mental illnesses (as well as benefits f*ckery) on FB (friends-only), because so many people don't understand, or don't believe. I think that, if they know me, then find out that I have these conditions, it probably destigmatises them a bit, especially the mental illnesses. Instead of thinking, "They have depression? Uh-oh, crazy person!", hopefully they'll think of me and think, "Oh, waylay has that, and she's not scary or faking or an axe-murderer."

    That's the hope, anyway.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • WaylayWaylay Member Posts: 922 Pioneering
    @Victoriad UGH. Sorry you have such awful people in your life!
  • JurphJurph Member Posts: 346 Pioneering
    It's a shame ignorance isn't bliss!
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    I suppose because I am the type that just accepts what I see, I don't question anyone. 
    I also have a sense of humour- nature's best medicine.

    I am different if you like because my issues are invisible. But I can joke and say meds being changed I'm in la la land, more than usual.  :)
    Let's face it saying to someone you have known for three years, what did you say your name was again, gives you away! 

    As for MH, I don't wish any of that on my worst enemy. Experienced depression then had a breakdown.
    What people don't realise is that their beautiful roses around the garden life might just be one crises/ accident away from the cliff. 
    Life changing injuries means exactly that, for you, your family, your friends, your job. Probably why I joke I'm from Mars because I do feel as if I was just plonked here.  :)
    Do not follow me, I don't know where I am going.
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Victoriad,
    thats why Iv only got 2 friends left, I actually stood up for myself after 30 years of being made to feel guilty, inferior etc.
    i know how hard it is x
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Victoriad said:

    Keep Calm & Let Karma Carry On 

    Thank yoy....but it can be very extremely difficult at times when certain people press your emotional buttons.
    But as I say Im making strong efforts to cut out the stressors in my life.

    Best thing I did was move on/ forwards. I couldn't stay friends with people that I didn't have anything in common with. 

    Do not follow me, I don't know where I am going.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
     Victoriad,
    pits very difficult but for your owm mental health, needs must.
    you definitely see who are true friends and family when you need them
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Victoriad, Iv got your sausage fingers tonight  ;)
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Victoriad,
    your not prying.
    got sleeping tablets changed, not used them yet, scared to on my own. Got a friend staying with me tonight so will start them tonight. Referring me to CPN asap while waiting on referral to psychology, 6month wait.

    she explained some things I was experiencing was to do with my depression and discovered I do have a label for anxiety, “ social anxiety “.

    thanks you for remembering x
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Victoriad,

    Thank you x
    been thinking about blue badge, not a bus pass yet, places etc with lots of people close in sets me off but blue badge would help with my friend parking close to where I need to go, maybe.

    cinema, I used to go all the time, not been in 3 years, the noise, people etc. Baby steps as my doctor said .

    im very grateful for your advise, thought x
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • WaylayWaylay Member Posts: 922 Pioneering
    @whistles Yeah! It is a lot like you've suddenly been abducted by aliens and then put back into a slightly different version of Earth. Only you're the only one who knows....
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    CEA card is really good if anyone can make use of it... I can't do things like that anymore - Misophonia/Hyperacusis inc a number of other reasons 

  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    What's social anxiety?
    Do not follow me, I don't know where I am going.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    Hi @Victoriad
    It's not always that simple but my way of coping is avoidance so I'm v isolated bc of it
    ...selective sound sensitivity may not be music volume but something reasonably normal such as an audience clapping or wrappers rustling in the cinema or even the pitch of someone's voice and cutlery being wiped and thrown into its sections in a buffet restaurant can all be uncomfortable...repetitive sounds can end up reducing me to tears unless I can remove myself from situations that could be a trigger 

    The volume of cashiers scanning can be annoying so I've started asking if they could turn it down - every item bleep bleep bleep! 

    Gov are currently funding research atm and there's a convention in US so more there is more awareness happening ;-)
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    Thank you & hugs back too @Victoriad

  • BeckiBecki Member Posts: 1 Listener
    My PIP assessor I think because I was dressed and got there that I had no problems. But what they don't see is how long it took to get up and dressed and how awful the rest of the day will be. It's just a snapshot.
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Victoriad,
    i will see about bus pass, at least I would have it if necessary.
    maybe will see if I can download the forms.
    I have a council office just along from me so can ask someone to hand it in.
    Also thinking it’s proof if I was to go somewhere you get concessions, carer/companion free.
    Highland show for example, was there last year, wasn’t as scary as I thought, open spaces, no need to go to crowded parts.

    Thank you again  :)
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    The word social made me immediately think of people and places. Not sounds.
    I know people with autism who can't bear certain pitches and sounds, not saying this is you. I'm just showing my lack of knowledge because I haven't looked it up. 

    Sort of bugs me that pip didn't want to know about anyone's llnesses etc. Because they wouldn't know the symptoms that the person is struggling with that stops them from doing the descriptors. Sorry I digress.
    Do not follow me, I don't know where I am going.
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    Mine is more related to PTSD which inc startled response too and others all invisible unless pain suddenly takes my breath away or anyone is observant enough to notice injuries from my previous physically demanding job and ageing isn't helping the accumulation - MR/Appealing has most def had an impact too 
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    susan48 said:
    Victoriad,
    i will see about bus pass, at least I would have it if necessary.
    maybe will see if I can download the forms.
    I have a council office just along from me so can ask someone to hand it in.
    Also thinking it’s proof if I was to go somewhere you get concessions, carer/companion free.
    Highland show for example, was there last year, wasn’t as scary as I thought, open spaces, no need to go to crowded parts.

    Thank you again  :)
    Certain crowds are a problem for me. You do learn to look out for the type of crowd that's likely to creep to a problem. Depending on what you are avoiding.
    People having a nice day out, tend out tend to be the ok crowds. Change that to the evening out and forget it.
    Do not follow me, I don't know where I am going.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @janice_in_wonderland   Pleased to meet you and every body especially all my favourite people.  You know who you are.  Love you all.

    I was born with a disability and have mental issues as well.

    Plus my hearing loss and it is effecting every day.  

    When I was growing up my Mother who never really understood the issues and problems.  Always condescending, patronising woman made it worse for me.  Shouting constantly and telling people that he has problems and in her mind attracting more than should attention.

    Tried unsuccessfully to make every little ounce of my disability look to others I am the problem, acting and the Oscar goes to demeanour.

    Never ever in my life felt so uncomfortable about my problems and issues.  Pointing out to Doctors and medical staff he is OK and in absolute pain, agony with some days.  Secret visits to Doctors and the worse of all.  The interfering busy body medical receptionist.

    We all of us in the community have had those have we not.  Telling Mother of my visits.  Sorted that out told the Doctors.

    All Mother did was put my meds down the toilet flushed them.  Had a big bust up and told her the truth.

    Nothing wrong with you she hollered and I then started to get annoyed and angry.

    She all my life denied my treatment, operations the rest.  Could fill an exercise book.   When I am trying explain illness she had no clue about.  Stigma and the rest.

    Only since leaving that I was right and did the correct thing seeking help and support .

    Remember those days mental illness a stigmatised illness.  Those hospitals I went into did not help.

    Even those days any illness was treated with brutality, harsh and some times blunt views on how you should be dealt with.

    Also going to hospital with any operation I had .  Such as on hands or feet and the attitude of my Mother was enough for me.

    I would go in and first thing I would do upon entering bar her from visits.  So they went away on holiday.  One time had to be left alone to cope.  Went away all of them, was out in three days or four.

    No one home stayed with a friend, who realised the situation.

    Remember being ill in my Mothers house came with a caveat.  You not ill going to work or to where ever.  Understand this you have depression and anxiety.  Really depressed forced out of the house.   Lots of verbal's and end up outside no coat and the rest

    Found myself in work emotional and very much not wanting to be there.  How I got there do not know.  I know I recall did not drive, too much.  They one of the staff took me home.

    To my Mothers chagrin do not want him here he is alright nothing wrong.  You must understand on meds told by Doctors can not work.  The attitude and all the rest.  Calling work colleagues got you fooled .  Thank god for a mate at work who telephoned her and told her the real reason the truth.  Everything.  This made me became probably into a alcoholic.  

    Also found the courage to stand up be me and have the energy to fight for what I need.

    As I grow older have had many times why we should be a community.  Not saying that we have problems and issues.  Try to seek solace and realise that we can be helped.  Given support, ease the problems but not cure.

    Among other reasons I had said before.  This is why I am never ever critical of people with any illness or disability.  Why would I.  Understanding each other is important and we all should honour and respect each others issues and problems.

    Take care
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Thanks Victoriad,
    whistles, I’m totally there with nights out, not been on one for years, that ended up me in an ambulance, panic attack?

  • WaylayWaylay Member Posts: 922 Pioneering
    @janice_in_wonderland I have misophonia too! I'm pretty lucky, though, as I only have 2 trigger sounds: barely audible music/radio coming from someone else's headphones, and snoring.

    TheTfirst one is fairly easily avoided: when I'm able to go out I just wear headphones most of the time. Snoring, however, is a bigger issue. I wake up immediately when someone starts snoring, and I'm instantly enraged (the music/radio one makes me feel panicky, not angry). It's really hard to control, and I've smacked or kicked a few people in the past because of it. It happens on the odd occasions when I snore, too, which is kinda funny. ;) I had a cat who snored sometimes, and I had to start locking him out at night, poor thing. 

    I once had to get off of a long distance coachcin the middle of nowhere, Vermont, and wait for the next one because some guy was snoring and I couldn't drown him out. Once, when I was camping in the middle of the Mojave Desert with a few other people, someone started snoring, and eventually I picked up my sleeping bag, walked a quarter of a mile away, and went to sleep there. There was a bit of a panic in the morning when the others woke up to find me gone. ;)

    Unfortunately, I've had partners who snored every night, and I either had to have another room to go and sleep in, or we could just never sleep in the same place, which kinda sucked. 

    I can't share a room with someone I don't know well (I had to sleep in a bathtub in a hotel bathroom once), and when I used to go camping a lot I would sleep in a tent a little way away from my friends, because two of them snored. 

    *shrug* Not the worst thing ever, but rather inconvenient. 
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    Hi @Waylay
    Thanks for your reply and for sharing your experiences too...
    I wondered who else may also suffer this way so maybe a new discussion is worth starting...

    I tend to manage mine by either mimicking (echolalia) which can actually be really funny at times or I internalise things which isn't funny bc if I can't deal with it I end up really upset rather than angry

    I can't sleep through anyone snoring so relationships of any kind feel like 'space invaders'! I'd have to take a sleeping tablet which isn't the answer bc of sleep apnea which has been known to cause me to cough n choke so I don't know the answers for that apart from separate buildings let alone rooms or as you say much distance when camping which I would only cope with wild camping although getting to n from a suitable pitch alone with heavy bottles of water etc could prove to be a challenge but so worth the escape from pollution inc smells light and noise  

    I will invest in new headphones soon too but I read that getting dependent on them can be both positive and negative, headphones don't have a setting to filter out specific trigger sounds (such as traffic, anything electrical that buzzes, carrier bags and crisp wrappers etc etc which sound loud to me) and allow other more pleasant sounds like birds singing which I love - people have been amazed how I can point to wherever a bird is singing as they could only hear immediate obvious sounds/noise which I find they are suffering the hustle n bustle whilst I appreciate feathery friends so it has its plus side

    Eating out is limited/not happening atm a flare up can last several weeks even months (not just selective sound sensitivity affecting my life) but I'm sure ppl think 'who does she think she is?' simply bc I would rather sit somewhere without the sound of cutlery and crockery chinking and clanking whilst trying to eat or drink; such loud places I regard as anti social - places like The Savoy are perfect! 

    Thank goodness for mobile phones having a volume control and loud speakers bc one particular old school friends voice and behaviour is a trigger so I have to limit contact 

    I'm like a hermit since moving to more suitable accomodation so I hope I connect with others who accept I just need to live a quiet life and limit anything unnatural bc chemical sensitivity makes me feel sickly too - I can't help being hyper sensitive to modern living and need to live off grid but would be too much to survive alone 

    Thank goodness for more public awareness re invisible disabilities 

    TY for reading 
  • WaylayWaylay Member Posts: 922 Pioneering
    Yours sounds worse than mine! It's really only a problem in relationships or while traveling, and I don't travel anymore...
Sign in or join us to comment.