Halloween costume

I've always loved dressing up in costumes. When you put on a costume, it feels like you get acess to another part of your personality for a little while. Sometimes it can feel liberating to hide behind a costume. Allow a hidden side of yourself to come out. When you think about it, to some extent we put on costumes every day. We choose outfits and a part of our personality that's appropriate for the occasion. This weekend, the dark, gruesome and grotesque costumes are coming out. An innocent flirtation with the darker side that lives within all of us.

This year I feel like I have flirted with many new aspects of my own personality. Suddenly I'm standing here in October realizing that I am not quite the same person anymore, something has changed. A bit like the werewolf maybe? Both the butterfly and the wolf's connection to lupus is about the rash over the bridge of the nose and cheeks, but they are also good symbols for some of the involuntary changes you go through. The butterfly is a slightly prettier symbol of transformation. The werewolf, on the other hand, is perfect as a Halloween costume, because one thing that never changes, is the joy of dressing up for Halloween! So this year it had to be werewolf costume.

Lupus can feel a bit like a werewolf curse. Last Christmas, I felt  the physical ravaging particularly well throughout my body. The wolf was not kind and almost forced me into prayer in front of the pillbox in the morning. Being made aware of your own mortality in that way, does something to you. Feeling the fear that the pain would never end, but become permanent. It was a light bulb moment realizing how much self-confidence and self-worth one  had put into work, hobbies and things one could usually do without a problem. If these things suddenly disappear, the fall will feel all the greater if one doesn't have a secure core of self-worth. To feel that you have a value even if you can't work for example. Fortunately for me, this painful period was short and I have so far been spared a recurrence of the pain. But the awe of how vulnerable life and the body are, is still there and has changed me. Hopefully to a better and more humble edition. A nice side effect that has accompanied the disease is a greater understanding and tolerance for all the things you can not tell from outside of another human being.

​Getting a chronic diagnosis is a bit like being uprooted to be replanted. Meaning you would rather be planted back in a more nutritious place, so the flower doesn't wither. The fact that the disease is triggered and triggered by something in the environment has brought with it a domino effect of thoughts about my life, how we live our lives, and how society wants us to live. The food we eat, how we treat the nature around us, what qualities and values ​​we prioritize and value. One is forced a little to turn off habits, thoughts and actions that have been automated. Reassess and see if there is anything you should clean up, remove, or rethink. To those around you, it may seem that you have become strange and different. In reality, it's more about figuring out how to live your best life with an unstable trigger mechanism within the body.

Where the wolf represents the pain, the hurt and the brutal lupus can do to your body and mind, perhaps the butterfly illustrates the slightly finer, inner change. Because you are forced to look inwards. Find the strengths and qualities you can use to cope with the new life. Be concious of the mental nourishment and information one chooses. It's not necessarily done in a jiffy, you may have to go through several stages. But once you get through the first stage, the next will be easier. I tell myself when I'm in need of a pep talk "You landed on your feet after 2020, you can handle this".

It's said that if a butterfly struggles to get out of the cocoon, you shouldn't try to help it, because then it will die. It's the wear and tear of the cocoon that gives the wings enough muscle power to fly. It's a nice illustration that "wgat doesn't kill you, makes you stronger", but when you have lupus you quickly discover  that it's not necessarily just a matter of giving a little extra, pushing a little harder or being better to escapethe cocoon. Sometimes time, calm and patience are the only remedy. It can be frustrating, but in return the view feels all the more beautiful the times you do get to fly.