So this is Normality? Chronic Illness, Simon Cowell and Getting Real

I do remember when I received my wake up call.  I was in the consulting room at the Central Middlesex Hospital in London, sat opposite the most awesome Rheumatologist I have ever known, Dr Alan Hakim.  By this point I had been chronically ill with actual diagnosed illnesses for five years, with many years of struggling for a diagnosis beforehand.  He had just diagnosed me with Classical Type Ehlers-Danlos Syndrome.  I can’t remember the lead up, but I made the statement, “I know I’ll never be normal.”

He looked at me, unblinking and said, “What is normal?  Define normal.”  And I couldn’t.  “Normal is what is normal for you,” he explained, and I realised he was right.  There was no reason to sit and be bitter about my diagnoses, that now I had been diagnosed with EDS, I knew that the likelihood of my previously diagnosed ME/CFS ever getting better was now a very remote possibility.  All I could do was to get on with things, work out what it was I wanted to do.

It was at this point that he asked me had I thought about considering a career in Health Psychology?  I had told him I had studied Cognitive Science as an undergraduate, but I had never heard of this discipline.  He said he thought I could use my experiences to work in the field, and I resolved to look into it.

At the point of writing this, I have a Masters in Health Psychology.  I have been trying to get work as an assistant Health Psychologist, but competition is fierce, and with my accumulation of diagnoses since I first started on this path I am really not up to that kind of work at the moment.  Maybe that will change, but I don’t dwell on it.  The ultimate goal is to do a distance learning doctorate in the subject, but my current finances definitely do not allow for this although I know exactly what university offers this and the structure of the course.  Instead I have been trying to find ways of putting my education as it stands into good use.  That was always my aim and I seem to have been somewhat derailed.

I think that I was right when I previously said fear was holding me back.  But it’s actually not fear of failing in the classic sense, I’m actually scared of people misunderstanding my viewpoint.  I do approach my conditions differently, I have since the consultation I described above.  Years ago I used to regularly get into discussions where people did not understand that I am on the side of those with chronic illness, but I do not believe that there is no hope, as long as you are willing to help yourself as much as you can.  More recently I have bitten my tongue about some of my more extreme viewpoints, but I actually think that they need to be said, because somewhere out there someone else is thinking those things, and thinking that they too are the only one, too scared to speak out.

But you know what?  I really do think I have something valid to say.  I don’t do dry self-help, I don’t do Zen, but I do believe in getting real about living with chronic illness.  Earlier today I heard someone say they admired Simon Cowell for his brutal honesty and his absolute belief in his own opinions and abilities.  I need to be more like that.  I need to be the Simon Cowell of chronic illness.  It’s time to be honest, be practical, get real.  This is my experience.  This is my normality.

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Finding my voice

I have a dilemma.

Over the new year, my parents both individually suggested, again, that I share my story.  This has been something that has been going on for several years now, and comes up with each new diagnosis I receive.  They think that I might inspire people living with chronic illness and perhaps help a little.

To tell the truth I do want to do that.  But I am having problems with so much of it.  Firstly, I’m not a writer.  I’m actually a speaker.  Ask me to make a presentation, be it to 1 person, or 1000 (and I’ve done both) and I’m in my element.  Ask me to write something and I’ll stare at a blank screen.

So often I open up my computer and sit watching the cursor blink in the ‘New Post’ box.  I know what sort of thing I want to say, but I struggle to find the eloquence with which to say it.  A mere quip aimed at me in a supermarket can result in a super fast witty comeback.  Just what is my problem?

Is it too much pressure, that my desire to write all these things that I have been mulling over in my head for years is actually stopping me from just sitting down and doing it?  Likely.  More likely is my crippling fear of failure.  It has to be good.  I’ve got to be good at something.  I see my friends making the best of their lives with chronic illness, they all seem so talented.  What’s my talent?

If I listen to the general consensus, my talent is that I ‘just keep going’.  Well, isn’t that what you do?  Why do I seem to attract such comments about this from people?  This is why people tell me to write it down, to go out and speak about it.  But I just don’t understand.

I’ve always had ‘something’ wrong with me.  So, it wasn’t diagnosed until I was in my teens/twenties, but it was always there.  Consequently I’ve always been tired, I’ve always been in pain, I’ve always been coming down with one thing after another.  Apart from the drama in the few months prior to my diagnosis, I have always stuck close to my baseline so that I don’t have huge ups and downs.  There is no sense of loss, because I never lost anything.  I never had it to begin with!  Hmmm… this doesn’t sound like a particularly scintillating story, does it?  Just. Keep. Going.  Oh there we go, written in 3 words.  I must have attended the Widdecombe school of authorship.

Conversely, I could never tell people how to take care of themselves.  I stay up too late, I don’t eat healthily, I ignore my food intolerances more than I should for the sake of satisfying cravings (and my budget), I forget my pills, the list goes on.  OK, so I might think about things a little differently (Ok, a lot differently), but that’s not enough, is it?!

Then there’s the approach to take.  When I was pregnant I didn’t read “What to expect…” etc.  I read a hilarious week-by-week account of pregnancy.  Facts interspersed with humour.  My Dad thinks I should take this approach, being a fan of my lie-down comedy via Twitter, and even suggested a working title of, “Oh f**k, what now?!”  My Mum prefers a more autobiographical approach, telling my story in a more straightforward manner and offering advice through my own experience.  Well, what to do?  At least they are of the opinion it is worth writing about.

I just find I currently spend so much of my energy trying to live ‘normally’ – working, looking after James etc. that I don’t have the energy to sit and write.  I have notes.  Lots and lots of notes.  I make them at work when things are slow, or when a thought strikes me as worth considering.  But by the time I get home it just gets added to the pile and I’ve got to think about hoovering, or changing beds, or laundry, or what to cook for dinner.  I tried to set up this blog to keep my hand in, to find out what my style was going to be, I’ve tried soapbox.  Can I even make having chronic illness funny?  I worry it’s only possible if I go into the realms of TMI.  Do I go there?  I struggle to even write here at the moment.  What is the point, exactly?  10 years ago I wrote reams, my story was all but told in full, people were reading it, commenting, admiring.  And nowadays I have even less energy and 100 times more pain than I did back then!

I’d dearly love to be at home all the time so that I could organise my thoughts enough to get up and running.  But I need the money, and I could hardly write about how to keep going if I’ve packed it all in just so I can write about how to keep going.  Not when there aren’t any guarantees in this world.  Does the world even need another book on the matter?  Oh hello, there’s that fear again.

Hardly inspiring, is it?

“Disability cuts don’t affect me.” Are we all in this together?

This post is part of The Broken of Britain‘s One Month Before Heartbreak blogswarm.

In the New Year’s Honours list, MP Anne Begg was made a Dame for services to disabled people. Herself a wheelchair user, there was initially outrage when media outlets proclaimed ‘Disabled MP made a Dame’, the implication being she was made a Dame for being disabled rather than for her work. Hearing her comments on the news, that disability is not about being unable to do things, it’s about doing what you can, and that her wheelchair had liberated her, I turned to my family and said, “Well, she sums up exactly what I feel.”

I have been in an ongoing battle with a family member in recent months, over my choice to refer to myself as disabled, and my vocal support of disability rights. It’s not nasty, it’s just the elephant in the room. Unfortunately they cannot come to terms with the fact that I am affected with multiple conditions that cannot be made better. They’ve not got anything against those with disabilities, but they do buy into the belief that disability is all about wheelchairs and serious mental impairments.

Personally, since accepting my limitations as disabilities I have never felt more free. Instead of making excuses and feeling like a failure for all that I can’t do, I am proud of myself for all that I can do. In my mind, and indeed, Dame Anne’s, that’s what disability is about – being empowered to do what you can, and not being judged for what you can’t do.

I’m not receiving Disability Living Allowance. I never have. I applied for it in 2001, when I had been diagnosed with ME/CFS for 2 years (having been ill for many years before diagnosis), and I was refused. My Dad assured me that that happened to everyone, indeed it happened to his father who was unilaterally paralysed from a stroke. My dear Grandpop had admitted to being able to make himself a cup of tea. Apparently, making tea whilst semi-paralysed is equal to being able to fully care for oneself – to get out of bed and dressed without assistance, to get in and out of the bath, to cook a full meal etc. With my Dad’s assistance, he successfully appealed and received higher rate care and mobility for the rest of his life, which he used to pay for help. He also got a mobility scooter so that he was able to get out and about. When I was still able to walk home from school, I would often see him on a Thursday afternoon, happily heading for the local shops to collect his pension and buy sweets. My cousin even drew a fantastic caricature of Grandpop on his rechristened “Healy-Davidson”, the object that made the biggest impact on his last years of life. On the night he died, Grandpop called his sisters, telling one of them he was going to go out on his scooter, despite her protests that it was late, to see the sun set. I don’t know if he actually went out, but it’s a nice memory.

I never did appeal for DLA for myself though. I decided that at that point I ‘wasn’t disabled enough’ and left well alone. When I was diagnosed with Ehlers-Danlos Syndrome I again considered re-applying, but again, decided I wasn’t at a point to need it – I was working, had come off Incapacity Benefit, why did I need benefits anymore? I made a decision that should I become unable to work in the future, or needed specialist services or care then I would apply. I’ve stuck to that. For now, I am receiving enough benefits, more connected to my status as a single-parent having left an abusive relationship to not warrant needing any more. I don’t need any specialist services for now, I own a car, and I work part-time. That’ll do me for now. Besides, I don’t know where things are going with this, and frankly, I could do without all the hassle of filling in complicated forms and attending stressful assessments.

But there are thousands of people out there who are already at the point I hope never to reach. They are in need and the planned cuts and reforms of DLA will affect them. I have already said that I believe that disability is about doing what you can, and for many in receipt of DLA, that’s exactly what it is used for. DLA enables people to afford care, adaptations, aids, transport and other services that empower them to live their lives, to just do what they can.

When you’re not the one making the decisions, faced with spreading the budget as thinly as possible to make everyone happy, it is all too easy to criticise and get angry. But it is important to support the disabled, and as Dame Anne says, not to exclude them from society. DLA is not a work-related benefit. The vast majority of claimants cannot be forced to work by cutting them off. Indeed, for some it is the thing that enables them to afford the support to keep them working, productive and happy. It is estimated that half of working DLA claimants will have to give up work if the proposed cuts come into play. Ironically, taking away DLA will cause many to become the stereotypical ‘scroungers’ that the media loves to hate. Far from being empowered to take control of their lives, many will be left unable to get out, unable to access services. The upshot of this being that this may result in less people being able to contribute to society in a variety of ways, impacting on other areas of the system.

No, it doesn’t affect me.  Not yet.  But I am all too aware that one day it might.  I have heard people say “It doesn’t affect me,” without thinking it could happen to them too, and that makes me sad.  We’re all in this together, as they are so fond of telling us, so I will speak out about it. Because I care that if we’re all in this together, why disempower so many?