There are plenty of things that have changed since my diagnosis. For example, I now live on a low-sodium and low-potassium diet and the convenience of being able to eat whatever I want whenever I want no longer exists. I take a cocktail of prescription medication that I can only keep track of with a 7-inch by 4-inch pill organizer, and as we come into my favorite Australian seasons of spring and summer, a combination of sunscreen and zinc will be my constant daily companion – and that’s just the very basics of it.
Don’t get me wrong, on any given day at least one of those things or a multitude of others can be internally driving me insane – and on bad day you can find me breaking down under the weight and frustration of all of them at once. But I can handle all of that.
I’m not ashamed of the fact that I have lupus.
I can’t say that I’m at all proud of it, however it’s not something I have control over. It’s part of who I am and I know the more accepting I am, the sooner I’ll be able to start claiming more and more of my life back — it just might have a different spin than what it used to.
I work hard to be fairly open about my condition, partly as the majority of the population has a big black question mark in relation to lupus. But also I know that in my case, talking is a means of healing.
I won’t ever use it as a crutch or an excuse, however if I need to give a genuine explanation for many situations over the last few months, I won’t be making up some unbelievable story — I love honesty and for me, the truth is freeing.
What I am really struggling to deal with is not having to tell people I have lupus, but the reaction I receive. It kills me.
I can’t deal with the change of facial expression — it’s as if they don’t view me as a whole person anymore, they see me as my illness — as a thing. And even though they generally have no clue of the condition I’ve just mentioned or anything it might entail, anytime you preface something with “diagnosed,” the assumption is it’s bad, if not terrible, news.
And truthfully they’re not wrong in this assumption. This was not and will never be considered good news. I won’t ever joyfully praise the day I was told I had lupus. However, when I was given my diagnosis it didn’t automatically make me secondary to the illness, it wasn’t a death sentence, and I’m very much still alive, more than capable, and fighting.
And I can’t deal with that look of pity.
I know it’s an automatic response to learning of someone else’s misfortune and it’s only a sign of compassion, for which I am grateful for it’s well-meant intention.
But pity does neither of us any good; what I need from you is understanding.
I need other people to understand that while I’m very much still in the early stages of learning, it’s not going to stop me from pushing all the boundaries to find out what my new limits are.
I need them to treat me like everybody else, please don’t tip-toe around me. I hold myself to the same standards as every other person, if not higher. And I will push to be as hardworking, determined, and persistent as I was pre-lupus — and should I ever need help, I know to speak up.
I need them to know that there will, in fact, be times where I may need their patience; and it’ll hurt my pride to have to admit but in those moments I’m not nearly as strong as I want to be, and that truly hurts.
But more than anything I need them to understand that while my life may have admittedly gotten harder, it’s never stopped and I won’t ever reduce myself to the illness I’m living with. I hope they won’t either.
I am human and just like everyone else at times I will – and do – struggle.
But also, just like everyone else I have the freedom to define my life as I choose – and it won’t ever be by this chronic illness.
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