This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

The Harsh Truth

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Not long in to the new year I had a series of discussions with people close to me and came to a big conclusion…I had let my illnesses change me for the worst.

Apparently, a lot of people change when they are diagnosed with a chronic illness. Often seeing a psychologist helps to settle in, but long term, you can’t deny it would be hard not to become affected. I did what you would expect any young female growing up in a caring family environment. I began to take advantage of my parents kindness and grew into a selfish, sullen child.

I am ashamed of how I came to treat my mother especially. She had grown so accustomed to the pains that came with lupus and arthritis, and how much these changed my moods, that she just let them pass. She let me grump and grumble. She let me demand, be rude or obnoxious. She let me boss and push.

Part of lupus is the mood swings, and part of the treatment of arthritis is steroids, which of course means “roid rage”. But this is no justification for the way I allowed my sickness affect others.

It is a hard thing to handle physical and emotional pain. It is not healthy to hold it all in, we all know that. This does not excuse venting it on to those around you. I am not the only person to go through this experience, and I certainly and no better than anyone else in this situation, I have learned.

What I am trying to say, I suppose, is that there were days when I was not in pain, but I was still  inflicting it on to those around me. It is not easy to know when I am doing this, and it is one of the hardest things to talk about, as I feel like I am trying to make an excuse for bad behaviour, which I do not want.

So don’t just sit back and let this happen to you. Don’t be a victim to your involuntary mood swings, and don’t alienate those who are not at fault. Own up to the fact that you need help, even if you don’t think that you do. Take some time to find someone trusted to talk to. Someone that you don’t vent on daily, preferably.

I am suggesting a counsellor or psychologist. It’s not embarrassing, and you deserve it, really. You carry a burden not many people can understand, when you suffer from a chronic illness. So find that someone that has to sit and listen to you whine. It’s what they are there for. And they have the tools to help you become a delight, rather than the terror.

And that’s what we all want.


Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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