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Fluctuating symptoms - invisible illnesses

janice_in_wonderland
janice_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? 
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Comments

  • Waylay
    Waylay Member Posts: 971 Pioneering
  • Nystagmite
    Nystagmite Member Posts: 603 Pioneering
    Yes!

    And it was certainly the way at my PIP assessment.
  • whistles
    whistles Member Posts: 1,583 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.
  • janejr
    janejr Member Posts: 144 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
  • charlene
    charlene 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_wonderland
    janice_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 ;-) 
  • GizmoTiddles
    GizmoTiddles Member Posts: 143 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? 

  • GizmoTiddles
    GizmoTiddles Member Posts: 143 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
  • Jurph
    Jurph Member Posts: 361 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"
  • Nystagmite
    Nystagmite Member Posts: 603 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.
  • Jurph
    Jurph Member Posts: 361 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. 
  • susan48
    susan48 Member Posts: 2,222 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_wonderland
    janice_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 
  • susan48
    susan48 Member Posts: 2,222 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 
  • whistles
    whistles Member Posts: 1,583 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.
  • Waylay
    Waylay Member Posts: 971 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: 1,748 Listener
    The user and all related content has been deleted.

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