Friday 7 March 2014

DISABILITY

have MS.  I have a disability.
The medical dictionary says that disability is "any result of having a condition that limits what you can do". It is easy to recognize that everyday consequences of MS symptoms could be classed as disability (e.g. fatigue or chronic fatigue) and yet the public, i.e. most people, perhaps, look more for outward symbols of disability like walking sticks and wheelchairs.  This is not surprising, given the symbol of a wheelchair which is often used for disability.
In reality, three quarters of people with MS never use a wheelchair full time but they may have symptoms, including the more invisible ones like fatigue, which severely limit what they can do.  I know that I am severely limited in what I can do.  But, limitations are not always physical ones. MS can cause difficulties with slowed thinking, known as cognitive symptoms (brain fog), which may affect what someone can do.  It affects what I can do. The impact of Mental Illness such as Anxiety and/or Depression can also impact hugely upon a person's quality of life, and this really should not be understated.

The Equality Act defines disability as "a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities".  MS is automatically treated as a disability under the Equality Act.  This means that a person with MS is protected by the Act effectively from the point of diagnosis even though they may not see themselves as disabled at all.


But what does it mean to have MS?  What does it mean to carry the label 'disabled'?
As most of you that know me are aware, and as I have commented in my 'About Me' biography, I am struggling.  I am finding it difficult to come to terms with my 'disability'.  It is tough to re-adjust, to accommodate the changes; to accept that I am not the person that I was, or that I want to be - and to believe that the person that I am now is good enough.


I have mentioned before that I have had people comment: "Oh! You are really lucky; you've got a disabled parking badge."  To which I have to remind them that I was awarded a disabled parking badge because I am 'disabled', not because I am 'pretty'!


Living with MS I have learnt, and am still learning, to 'focus on the positive'.  To try to look at the things that I 'can do', rather than be defined by the things that I can't.  This isn't easy, there are days when it doesn't 'seem fair'; and I am right, it isn't fair; but with the support of my wonderful family and of REALLY great friends, a lovely MS Nurse, a splendid Neurologist and a truly fabulous GP - it is possible.  I don't want to be disabled, I want to be perfect.  But I am not.  This comes as something of a disappointment, and perhaps a shock!  I am not perfect. Who'd have thought?


I am however very fortunate that I have family and I have friends who accept my imperfections.  Who largely ignore what I am not able to do and focus on what I can do, and who make a huge effort to make me believe that I am, that I can, and to believe that the person I am is indeed good enough.

20 comments:

  1. WOW .. people have actually said "Oh! You are really lucky; you've got a disabled parking badge." ... I'm guessing they are not friends. What absolute idiots.

    Writing things like this can only make more people understand just what MS is and how just because you cannot see a problem, doesn't mean it isn't there.

    Stay strong and brave.
    x

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    1. I have had someone comment that, a work colleague, there were not being cruel or unkind, just thoughtless and a little bit stupid x

      I hope people find this helpful. Helpful to gain understanding for those who don't know. For those that sadly do, I hope these posts let them know that they are not alone.

      Thanks McFontaine x

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  2. To some of us, you are pretty perfect! ;-) xx

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    1. But you are much much lovelier than most x

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  3. You have the true British "never give up spirit" exactly what put the Great in Great Britain. The same unbreakable spirit which we are remembering 100 years on from 1914. If every person who sits on their backsides and moans about their lot in life had half the setbacks you have had they would have a reason to moan. You
    are a truly inspirational person who has given a lot to her friends, family and numerous work colleagues over the years I have known you and you continue to do so.

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    1. Thanks Maud. Up and At 'Em.

      My fabulous friends, of which you are one, make it easier for me not to give up x

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  4. Hanya, your blog post strikes so many chords in this household. You have a remarkable ability to articulate concepts of which many of us are acutely aware, but just can't find the words that get the point across. It is ironic that your MS has given you a whole new outlet for your talents. You speak for so many, so keep up the good work! xx

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    1. Thank You John. For your kind words, but for your strength, courage, and encouragement. For making me believe, for letting me dare to believe that perhaps I can x

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  5. Dearest Hanya, you continue to be the loyal, lovely, kind person you have always been and always will be - and now an inspiration and a help to others, as all these beautiful replies show. KBO as dear James would say! Janet xxxx

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    1. Thank You Janet. The frustration is when you want to do more, be more. But I have a huge amount to be grateful for, and appreciate people's positive comments x

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  6. Blimey Hanya you write well. Keep 'em coming.

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  7. Brilliant read. You write so well x

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  8. You've expressed very well the challenges and frustrations of dealing with disability in daily life, and it's inspiring to read your honest reflections. Facing disability at 40 must be very different from most people's experience: although the prevalence of disability is increasing as people live longer, it is a different challenge to reconcile oneself to declining ability in old age. They say that as you enter your fifties you enter a world of illness and disability - not necessarily your own but that of people around you, especially elderly parents. I certainly found it salutary to watch my parents and in laws become progressively more disabled, by stroke, blindness, dementia and disease, and to experience their frustration.

    Disability campaigners sometimes use the expression 'differently abled', which is a more inclusive idea that recognises that we all have different abilities, and either have or will have some 'dis' -abilities too.

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    1. Yes, 'differently abled'. I'd forgotten about that term. Focus on what you can do, whatever that is. We all face our own challenges and frustrations. The thing is to try and be kind, try and be positive, and try and be happy.

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  9. "It is tough to re-adjust, to accommodate the changes; to accept that I am not the person that I was, or that I want to be - and to believe that the person that I am now is good enough." EXACTLY what I am struggling with. Merci

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    1. You have to learn to be kind to yourself. Not an easy lesson to learn. But easier when you surround yourself with supportive friends x

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