My condition (CVID) is disabling.

I have a disability.

I am disabled.

Why is there such a stigma around saying this?  “Disabled” isn’t a dirty word, and it isn’t an insult, it’s just a fact.  My ability to do some things has been reduced, therefore I am dis-abled.  I have some official recognition of this fact – I receive Disability Living Allowance and used to have a blue parking badge.

For the first few years after my diagnosis (and for many years before) I was obsessed with proving to others that I really was ill.  My problem was that I never really look ill.  There’s a reason for this: when YOU get a bug your antibodies recognise it and create new antibodies that are specifically designed to fight that particular bug.  Once the bug has been killed, different parts of your immune system march in and effectively consume the bug.  This “warfare” going on inside you is what makes you look and feel ill.  However, I’m different.  I don’t make antibodies, so I can walk around with a serious infection whilst looking absolutely fine – no warfare going on in my body.*

The problem I always had was that I didn’t look ill or “disabled” and so no-one knew I had limitations unless I specifically told them.  I remember once parking in a disabled parking space at the station (having displayed my blue badge) and as I was walking from my car a man from the minicab office came out.  “Oi!” he shouted at me.  “You’ve got to be disabled to park there!”  I replied “I am disabled actually” and carried on walking.  “Oh really?” came the reply.  “Yeah, you bloody look it”.  Thank G-d my Mum was with me: “Wait here” she hissed through gritted teeth, and went marching up to the cab office.  I have no idea what she said to the man, but I do know that my Mum is a force to be reckoned with when she’s pushed!

It’s now 13 years since I was diagnosed and I still struggle with balancing the need to be treated equally with the need for acceptance of my limitations.  Only last week I had a coughing fit at the checkout in Sainsbury’s.  My coughing fits are a sight to behold – a deafening, hacking cough that leaves me breathless, doubled over and bright red in the face.  Oh and usually coughing up yellow stuff.  Sorry – too graphic?  Anyway, I am well used to being given a wide berth when these start, but during the Sainsbury’s incident a mother actually moved her child away from me.  Everyone in the line behind me started muttering and shuffling backwards, but I didn’t have any breath left to tell them they weren’t going to catch anything from me and I don’t smoke 40 a day.  I was left embarassed, apologetic, and feeling like I couldn’t get back to the sanctuary of my car quickly enough.

And as chance would have it, it turns out my son also has a hidden disability.  My 3-year-old little boy, J, has autism.  We are still waiting for the formal diagnosis to say exactly where he is on the spectrum, but my suspicion is that it will probably turn out to be Aspergers.  He looks just like any other boy his age, and at first glance usually behaves like others his age too.  So when he suddenly has a meltdown in the supermarket (they just adore my family in Sainsbury’s!) it is very galling for me to have people glaring and tutting at us.  I am desperate to explain to people that he is screaming hysterically on the floor because last time we were here I bought him a magazine, so he has come to expect that as we walk through the door, and can’t understand why things didn’t happen as he’d planned.  Or that he is spinning in circles with his hands over his ears bumping into people because he has gone into sensory overload and can’t take the tills beeping, people talking, babies crying, fluorescent lights buzzing, trollies squeaking, phones ringing noise.  “Don’t judge my little boy” I want to say.  “He’s not being naughty.  He has a disability“.  But I don’t.  Instead I sit down on the floor next to him in the middle of the cheese aisle, and I hold him close to me and put my hands over his ears, and get his favourite laminated picture out of my bag so he has something else to focus on.  And then we carry on shopping.

I once had a conversation with a man who had Multiple Sclerosis and used a wheelchair.  He described his experience of feeling invisible, and of people seeing the wheelchair and nothing else.  No-one expected anything of him, and people were constantly surprised at his abilities.  We compared it to my experience (and now J’s experience too) of people being surprised at our limitations.  We pondered whether it was better to have a visible disability or a hidden one, but ended our conversation none the wiser.

My condition (CVID) is disabling.

I have a disability.

I am disabled.

But sometimes I think I’d be much more able, less limited, with just a little patience and acceptance from strangers.

* Thank you to my fellow CVID friend L.M. for her explanation of why I don’t look ill when I am ill!

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