When to call yourself disabled

danm2010
danm2010 Member Posts: 32
edited 13. Feb 2019, 14:07 in Living with arthritis
Hello Arthur’s

(Arthritis recap)
I have arthritis in my hips - doctors haven’t decided which type not that it really matters. I had a flare 6 months ago and now they are telling me the fluid between the joints are thin and the joint is damaged. It started with the hips but with the change in walking my knees and feet have deformed to support my weight (additional steroid weight doesn’t help :D)

Even with the steroids, pain killers, amjevita injections, methotrexate the improvement is minimal.

I recently decided to go for pip - (I’m still working before anyone decides to label me as lazy) - the power for supporting my family and my own I won’t let this defy me attitude drives me - I managed to get advanced mobility and standard living which is more than I expected! Takes the pressure off financially and the blue badge helps but my girlfriend asked an important question after I found out I’ll receive pip.

(Sorry about the exposition)

ARE YOU NOW CLASSED AS DISABLED?

I didn’t really know how to answer - I’m still me mentally obviously physically I know I’m not walking correctly, I shouldn’t wake up in pain and I shouldn’t need help around the house or decide if I go somewhere how much walking will be involved. The world around me is telling me maybe I should label myself as disabled by getting approved for PIP and people taking time around me but I find it hard to think of calling myself that.

(I know we shouldn’t label ourselves and if you feel you aren’t you shouldn’t treat yourself as such but I think if anything it’s an interesting question to be asked)

When do you go from “normal self” to disabled self - is it something you decide, the world around you or both?

What are your thoughts? Was there a definitive moment when you thought I’m actually disabled now.

Interested to read some responses,

Dan


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Comments

  • Tyjen
    Tyjen Member Posts: 14
    edited 30. Nov -1, 00:00
    I think its something none of us want to admit to ' being disabled' I recently found out there is no longer a disability register to go on, so basically anyone can say they are disabled wether they are or arent. Ive been disabled for 20years plus and have only recently come out to say I am disabled when asked if I have a disability, its a label I dont want, more so because Im very independant so I found it hard to accept and own it! and also accept or even ask for help when I need it.
    I am from another planet, but its ok, they know me there.
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Would it feel any better if you acknowledged that you 'have a 'disabling condition' rather than defining yourself as 'disabled'?

    I know it's only a matter of semantics but then what is your image of a 'disabled toilet'? To me that's a vandalised loo; of no use to anyone.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I'm disabled and care not about the label. I have walking aids of all kinds, a mobility scooter for the superbly bad days, a blue badge and claim DLA so yes, I reckon that's enough to class me as such but the fact I am doesn't bother me in the slightest. It doesn't bother my husband either, as far as he is concerned I am the same person I have always been, I just move differently is all. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • danm2010
    danm2010 Member Posts: 32
    edited 30. Nov -1, 00:00
    Some intriguing responses.

    Seems like there isn’t a definitive moment until the person actually decides and feels it’s right to call themselves disabled or having a disabling condition.

    I think with future expectations of improvement I’m not going to call myself disabled or having a disabling condition until I’ve went through all resources of treatments and improvements and if all fails and I’m still in the same situation I’ll take on the disability mantle then.


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  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    I remember being stunned when my then GP said I must apply for the (then) Disabled Housewife's Allowance, now PIP. I wasn't disabled. I just couldn't do as much as other people.

    Of course, after much thought, I realised how different my life was from my contemporaries. They were all back at work after completing their families. I could barely, badly, get through a day at home and, according to my GP, half the methods I was employing to manage were downright dangerous and had to be stopped.

    It felt like I'd somehow been wafted to the wrong side of a chasm-without-return.

    It took me a long time to accept that I was not railing against being disabled but against being labelled a victim. I've now been disabled for almost 50 years but I've never been a victim and I never will be.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dachshund
    dachshund Member Posts: 8,008
    edited 30. Nov -1, 00:00
    I don't call my self disabled I am able to do what I want perhaps slower and with more pain but I enjoy my life I was born with cerable palsy to me that was normal Arthritis has slowed me down but so has age I enjoy life. thank you to this forum
    . take care
    . joan xx
    take care
    joan xx
  • kathleenT
    kathleenT Member Posts: 3,360
    edited 30. Nov -1, 00:00
    When I was able to work, I worked at special schools. Children with all kinds of 'disabilities' Autism, muscular dystrophy, Cerebral Palsy, Down's, Crie Du Chat. There were all kinds of enabling strategies and most managed to lead as full a life as possible. On bad days I remember I'm classed as disabled, but my experiences in schools for children with special needs really opened my eyes to the different capabilities we all have.

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein

  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I supposed I was first disabled aged seven with severe asthma (inhalers hadn't been invented and weren't until I was twelve). I knew that other children didn't spend the summer months indoors trying to breathe, and I was the perfect target for the bullies with my appalling eczema skin and inability to merely walk fast but I did the best I could within my limitations.

    We live in an age that worships youth, health and fitness. I once had the first never had the second or third. I think people cannot cope with the idea of disability, it's something that's fine for others to be or have (especially when one can patronise them and say how brave they are) but when it happens to you? Nuh-uh, it's not an option which was planned for, let alone wanted. Crud happens even in the best-regulated of lives because no-one is exempt from the possibility of bad health.

    I am not disabled or differently-abled and definitely not unable. I am me, I am more than my disease and always will be. I have two kinds of arthritis but do not regard myself as being ill. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Tyjen
    Tyjen Member Posts: 14
    edited 30. Nov -1, 00:00
    just curious after reading the positive responses, do you have support from family and friends? are you able to get out and about? do you have regular visitors? For me the answer is no to all those questions, I really don't feel positive about my life in general, I try and keep my glass half full rather than half empty but Im always knocking it over! :(
    I am from another planet, but its ok, they know me there.
  • danm2010
    danm2010 Member Posts: 32
    edited 30. Nov -1, 00:00
    I don’t get support from family or friends, but I’ve never asked as I value as much independence I can keep hold of - it’ll probably be easier and less painful if I did but I think as soon as I go down that route I’ll never come out of it. I can leave the house and drive and as for friends well they only come over if I ask them - i guess they don’t want to burden me I’m assuming but I also have a little girl to try and keep up with so don’t really have time to worry about friendships at the moment.

    Friendships and family I think you get as much out of them as you put in or maybe is its just the family/friends I have but sometimes that’s good as they will leave me alone and then we can pick back up months later like nothing has happened.




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  • Joel
    Joel Member Posts: 11
    edited 30. Nov -1, 00:00
    just curious after reading the positive responses, do you have support from family and friends? are you able to get out and about? do you have regular visitors? For me the answer is no to all those questions, I really don't feel positive about my life in general, I try and keep my glass half full rather than half empty but Im always knocking it over! :(

    I have a mixed answer I don't have support from family or friends, if I am being brutally honest a lot of my friends have dropped by the way over the years for a number of reason, but in no small part because of my arthritis. I stopped going out and socialising so much. People (especially when you are young, I am only 45 now) don't understand the days of fatigue or flare-ups and think you don't want to go so after a few "no thanks" they eventually stop asking, similarly in part it lead to the breakdown of my marriage.. As a result i don't have visitors.

    Flip side however I still drive, I am lucky compared to a lot of people on here as on my good days I can go out walking (albeit much slower than i used to). The main friend I have left (I have known since school) his mum has arthritis and has had for years. Shes had multiple hip operations and is on MTX like me so he may not "support" but he does understand.
    I have two amazing boys at ages 2 1/2 and almost 5 they take some keeping up with I can tell you! But they are the reason I get out of bed in the morning and the reason I go to work even if I am feeling tired or in pain.
    I guess what I am saying is if I look at life as a set of scales and put the good on one side (children, mobility, working etc..) then put the bad on the other (failed marriage, few friends, live alone, isolated, arthritis, medication etc..etc..). The scales definitely swing towards the bad in sheer number, i once had it all and now I have very little by comparison, especially after the breakdown of my marriage last year.
    But I'd drive myself mad thinking about it like that... I have positive and negative days like anyone, but I choose to try to look on the positive. When I wake up and I am tired and i hurt I just crack on and tell myself tomorrow might be a better day (this gets hard as everyone here knows when you have long sustained flare-ups).
    On good days... I try to enjoy life... I enjoy my children we go for walks, do school science projects, whatever really. Making sure you enjoy the good days helps get through the bad.
    My life will never be going down the "gym" and bouncing around without a care ... but its still my life and its just different to my peers. No point mourning on what i was when I was younger, just try to be happy in who I am.
    That said...as you say, we all knock the glass over sometimes...
  • Joel
    Joel Member Posts: 11
    edited 30. Nov -1, 00:00
    Just walked away after my long post and had a thought.. I guess its all about perception. My perception of myself and others perception of me.
    I don't consider myself disabled in anyway, I don't claim PIP (nothing against those who do, all power too them) I am just not ready in myself to take that mental step (and probably get returned a "no" anyhow).

    But am I disabled is something I have thought about recently, my work hours mean I do compressed hours (42 to 50hrs in 3 1/2 days). Then 3 1/2 days off (well looking after my children). At my last rheumy appointment he suggested that these long working hours with little recovery time due to the boys probably weren't helping and have I thought about putting in a request for flexible working under the "reasonable adjustments law", it may help.

    I dismissed it..But after writing my post above I realised it is all about perception.
    I don't view myself like "that" and I don't want others to. I am not going to be a burden to anyone.
    But its odd and one thing I like about this forum (and the verses arthritis campaign) is if someone asks me how i am and its a good day i say "yeah I'm ok thanks" if its a bad day i say " yeah ok... in pain today though..." don't like to moan and all that.

    Most people perceive "I am ok" as in normal no pain, just another day... but on here everyone understands "I am ok" actually means yes I am in pain and feel tired but that is everyday its just a normal day for me. I reserve the term "in pain" for bad days when I am really struggling.
    Everything is relative I guess. . and something maybe more people need to understand, certainly one thing my now ex-wife never understood which is a shame! lol
  • danm2010
    danm2010 Member Posts: 32
    edited 30. Nov -1, 00:00
    Hey Joel,

    I know exactly what you mean! - I haven’t lost too much due to my condition...maybe friends is dying off a little and my job security is in jeopardy due to me applying for the fix term contract and then getting a flare up just before it started so the prospect of getting an extended contract is minimal - I’ve literally just told my boss I’ll need to plan in 6 weeks off for a hip replacement.

    I’m still positive and I’m lucky I’ve got time to prepare for the worst.

    Dan


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