Anonymity

Who to tell, who not to tell.

As you’ve no doubt gathered if you’ve made your way to this post, you would have read that I have had multiple sclerosis for a long time. In terms of my adult life, more of it with MS, than without. I’ve dealt with my disease in a particular way. And I’m not saying it’s the way - as I’ve more than likely upset and confused a few people along the way. And that’s never going to be our intention, to confuse or upset people - but sometimes it does happen. But you know what? That’s ok as sometimes in life people respond to you in a way you didn’t mean.

All you really can do is lead with kindness and be honest to yourself about what makes you feel comfortable. Who I’ve chosen to tell, who not to, well it’s what works for me.

I encourage you all to find your way. Reason I say this is so much of our journey is beyond our control. What comes out of your mouth, well that’s entirely up to is isn’t it? This part we have complete control over. So to help me in my decision, sometimes I imagine how it might feel telling someone, versus not telling that particular person. Honestly there are pro’s and cons with both. I’ll share my decision making process and personal experience with you here, as it might help you with your own choices.

Hazard a guess the way you will approach this is somewhat embedded in your personality. The way you are, what motivates you, drives you and what you're actually, deep down afraid of, will most likely direct who and how many people you tell. I'll explain a bit about me so you can see how that fits in with the groups of people I have told.

For me, I am a naturally defiant personality.

I will stay fit.

I will stay healthy.

No matter how many extra diseases and treatment pathways come my way, I challenge any of this to change my life or, more importantly for me and my husband, for any of my medical limitations to change my lifestyle. See? Defiant.

To the brink of recklessness, but even I have an off switch and can self regulate. And this is mainly because I’m terrified people around me will start trying to step in manage me and my energy levels. And I can’t stand that. I’ve had this body for 36 years, ain’t nobody know it better than me.

But, well meaning people who love you, will try. So we have to prove to those people that love us, that we can be trusted with our own health and our own recovery. Therefore, out of necessity to protect my ability to make my own life choices and NOT have my schedule regulated by my family, I have learnt how to rest. It’s important that we are able to recognise our limits, and have the opportunity to do something, if we want to. For example go for a run, go horse riding, walk to the lighthouse. These are things I hold precious to me. And having someone say you shouldn’t? It’s debilitating. And this gets dangerous because that person is restricting you, and you naturally start to feel animosity towards them. They try to tell you not to do these energy consuming tasks because they love you and want to protect you. We understand that don’t we? Sure we may understand it, but I know personally, I bloody hate it.

For me, it’s so important to maintain control over this tiny patch, this little shred of how and where we decide to move our little bodies. Frankly this is pretty much the only space that is left, that we have any decision making control over.

So, be mindful of well meaning people trying to do the “best for you”. Be gracious about their concerns. However be prepared for the very real fact - other people telling what to do and not to do - it’s annoying!! Therefore, I screen and limit who I tell, because that also limits how many people I have to listen to telling me how they’ve read or heard about how to fix MS. Great, I’ll take your word for it over my consulting neurology professor shall I?

Just smile and nod, they read and listen to these reports about MS because they love you. Smile and nod, drink your tea and be grateful this person cares enough to research your condition. But be wary of this, being gracious and listening to people’s ideas about how they are going to fix you, it’s very trying. And it gets super boring…

The other element to consider, is that for me, well, I am quite shy about my personal life. People would probably describe me as a confident person, I’m fine in crowds and I don’t hate giving speeches or public speaking anymore than the next person. But I don’t like talking about the fact I have MS (or Tuberculosis, or a brain infection virus, or that we’ve had two miscarriages, or that I have alarmingly low white blood cell counts). The best way for me to describe why I feel uncomfortable, is I think it might be like a version of survivors guilt? I’m ok. I can walk, see, chew, hold on for the bathroom. I don’t need extra love or support, that should go to people who have it harder than me. I’m literally OK. I can run like the wind, carry my own suitcase, drive my own car, ride a bicycle, horses, walk the dogs. I can carry heavy plates to the kitchen and not spill my own coffee (aside from the usual and normal little drips here and there, I don’t spill it from being physically weak).

About 10 years in to this journey and it occurred to me why I’m so shy about my health limitations. I don’t want pity. But more importantly: I don’t need it either. I am actually, despite my medical chart, doing ok. I feel like the more people talk about my health, it keeps all these hurdles alive. That probably sounds whack. But if you keep talking to me about it, you keep it being there. Let me get on and let me get on like the next 36 year old Australian woman.

And let’s be frank, us Aussie girls, we usually go down swinging. With the last scrap of what’s left in our tank, I’ll still take a shot at whatever’s trying to get me. And that's very much me. I get my drive from a challenge, from a fight. Come at me illness! Some people are lovers. I’m very compassionate and have a hugely over-inflated sense of empathy. But I’m ferocious - I am 100% hands down, a fighter.

So you have a defiant fighter who is pity-phobic. It’s for these reasons, I guess that’s why I’ve selected which groups of people to tell, and who not to tell.

OK more back story, I work in a male dominated industry. Engineering. I’m old enough to notice casual sexism and the fact it is still rife in 2018. My interaction in the construction industry has meant that this casual sexism has fostered more productive professional relationships as most men I’ve come in to contact with will invertantly “help out the little lady.” Score, job’s getting built and my “annoying” compliance objectives are taken up by the masses. I explain this, as I already get treated like glass. I don’t mind, even if I did we’re a way off men and woman getting treated equally on a day to day professional basis. So I keep my head down and honestly, do my best to blend in. It’s gotten me a successful 15 year career and in time there will be more and more woman like me, so it won’t just be the odd female engineer plus support staff making up the woman’s sector of any business.

With all this in mind - I’ve always been very discrete about who I tell at work. I tell my team in case something happens, this way they are prepared. And I tell my line manager in case I need time off. Other than those selected few at work, I say nothing. I have decided that for me, being treated like glass because I have a vagina is one thing. Being treated like I’m incapacitated because my vagina also has MS, is an unbearable thought for me.

This choice will be different for everyone, we are after all very different creatures, you to me, and me to her. Or him. Sorry fellas I know there are blokes out there that have MS too. All I will say is work out your limits, what feels comfortable and what doesn't. Know that it’s ok to tell everyone. It’s also just as ok to only tell your immediate family.

It’s your choice, that’s all there is to it xx