The difference a day brings – Rare Disease Day post.

Rare Disease Day 2012

Rare Disease Day 2012

OK, so the acceptance part of things seems to have gone well as not only did I accept that I have a ‘rare disease’, I wrote about my experiences of having one AND – after more than a little deliberation, I hit the post button too!

That means that anyone who has access to my blog, my Twitter feed, my LiveJournal or my FaceBook had access to my post – had access to ‘me’.

I work in I.T. so, intellectually, I knew what that meant: thousands of people had DIRECT access to that information with the potential for millions more if they were linked to it, goggled it or simply stumbled upon it.

Millions of people had access to the fact that I had an illness … a weakness. For the first time in a loooooong time people had access to the ‘real’ me.

Now, thankfully a few things happened when that realisation hit me:

1 – I had a moment of pure panic when I went from intellectually knowing what I had done to realising, at a visceral and primal level, what this actually meant!

2 – I then had another realisation – tough! Nothing that I could do about it after I set it loose as that isn’t the way that the Internet works.

3- Then the biggest realisation of them all washed over me. It didn’t matter; it didn’t change anything! I wasn’t suddenly any ‘more’ genetically challenged (tongue n cheek there, I just love how that phrase sounds!) – this wasn’t a case of me becoming some sort of personal self-fulfilling prophecy and by simply admitting, out loud (so to speak) that I was ill that I actually was suddenly ill.

Nothing had changed.

… and, yet, everything had.

My wife read the blog post before I actually told her that I had done it. I think that if I had talked about it first I wouldn’t have been so honest about things, if I had written it at all; by talking about doing it I would have been able to make excuses and justify not doing it. So, I got home to a big hug and a kiss from her (she especially like the comments about her being wonderful for some reason) and that set the tone for the GOOD things that came out of my original post.

People were talking about my post, and rare diseases in general so awareness was being raised … if that awareness started with talking about me, then my disease, then other diseases so be it. They were still talking about it!

I had messages from people who are affected by rare diseases telling me that my post helped them – that it gave them a voice for their own questions, fears, and denials.

I had messages on email, Twitter and Facebook telling me that they were proud of me, or amazed by me and many actually expressing confusion at the fact that they had never known I had had a problem in the first place … that’s how good my mask was, you see. However, during and after these messages I realised that I was still talking to, and with, my friends the same way that I always had. They weren’t treating me any differently, they weren’t suddenly treating me like a pariah or an invalid.

They were simply treating me like me. For the first time, of course, they were able to do that because they knew about all of me, not just the part that I allowed them to know.

Somehow that actually made a difference. I felt humbled and more than a little awed by the things my friends were saying – because they were saying such amazing things about me and, really, all I had done was let them know about something I had no reason to hide anyway.

I’m still me, inside and out – I’m still tired, I’m still probably doing too much and ignoring my limits, I’ve still got some gremlins inside my genes doing their best to make things go a little left of right – but, I’m not spending any time hiding those things, nor thinking about how to hide them. If I show a sign of weakness then I’ll also show a sign of strength at the same time simply by doing what I do and being the whole, and complete, me.

Sure, every day is a different day – there will be days where my muscles cramp, or I’m so tired that I can’t actively play with my kids but there will be days where I’m pretty ok. That’s the other difference that a day brings with a rare disease – uncertainty but, THE difference today has brought is a certainty: rare disease may be a part of me, but it isn’t all of me so if I’m not going to let it beat me into submission then I’m damn sure not going to hide from it either!

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

@rarediseaseday #raredisease