Dealing with other peoples “Understanding” of your partners chronic illness.

Let’s admit it, Lupus is a bitch and unless you live 24hrs a day with Lupus, or live with a warrior dealing with the bitch, you have know idea what it is like, and you will never “understand” but thank you for trying.

If I had a dollar for everyone who says “you need to boost your immune system” or “get more exercise” I wouldn’t need to do Lotto. Friends and family (and even people you don’t  know) are always going to try and “help” you and give you lots of ideas because they love you. At first you say “oh that sounds great, unfortunately it is her immune system that is the source of all the problems and needs to be kept down” after the 3rd or 4th time it has now become “yeah thanks”.

The other thing they don’t see is the 25 days a month when you cannot get out of the bed, let alone the house. So when you are well enough to get out, they say how nice it is to see you, and that they don’t see you enough and you should get out more. Really! hello chronic illness warrior! doesn’t work like that.

My sister in law is a great support to us, at first her “understanding” and advice was flawed but over time she has become more knowledgeable and is now our goto person when we need help. She is a massage therapist, a vego (sorry, vegetarian) and loves to go power walking so she is at the other end of the spectrum from us, but she winds back when she is with us which is a great help, and she attends appointments whenever she can, even driving us up to the big city. Now that is the support a warrior needs.

I read a column by an Aussie lupus warrior – Kristana Page known as The Girl Who Cried Wolf – (amongst others) and one of the things she said in a recent column;

“Living with a chronic illness is an entirely different kind of beast. It’s such a cliché to say that you can’t possibly understand something until you experience it for yourself, but in the case of being chronically ill, I truly believe that. When you’re healthy, it’s easy to categorize the sick. But without knowing their struggles and what they go through on a weekly, daily or even hourly basis, you have no right to judge”

I couldn’t agree more, so until next time, keep slapping the bitch down.

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