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TAMS light up perth 2021

By Sue Dickinson – TAMS Support Chair

Have you ever wanted to disappear or become invisible when the ‘nasty masties’ are wreaking havoc on you?

Or, on the flip side, do you wish that people would stop treating you as if you were not there, like you are invisible, with your strange invisible illness tagging along beside you?

It can be a tricky word in our MCD world, this ‘invisibility,’ and it comes with a complex set of feelings. Most of the feelings are intense and uncomfortable and include anxiety, embarrassment, frustration, entrapment, anger, fear, despair, sadness and many more! At these times, we are not usually having much fun! Triggers for the nasty masties to have one of their tantrums can be many and varied. They can be as trivial as someone asking you to repeat something, or as severe as an anaphylactic reaction to ingesting something which is toxic to your cells, like a food or particular medication.

So, when these feelings appear suddenly and are so overwhelming and threatening, I often wish I had an invisibility cloak. Yes! You read this correctly, an invisibility cloak that I could whip out of my Mary Poppins bag and just disappear! I am told that there is no such thing and that my imagination is running riot. However, imagination can be a powerful tool and ally and actually features prominently in such self-help techniques as guided meditation and visualisation. The latter form an important part of some treatment protocols for many serious and chronic illnesses.

As for the other type of invisibility, it can be really challenging to find the correct words to inform others that we are truly present and accounted for without hitting them over the head with all those feelings mentioned above, such that they run away!

So, at our next Online Support group on Saturday, 25 March from 4–5 pm, we invite you to tell us how you may have managed invisibility in both its forms. There must be strategies we can share which could work like an invisibility cloak and achieve similar results. Our collective strength is our magic wand!

We would love to hear from you about the ways in which you have made yourself ‘invisible’ when needed.

We would also love to hear what you have found helpful in countering that sense of insignificance that can come from others who do not understand your ‘invisible’ mast cell disease, and how we can better explain it.

See you on Saturday, 25 March 2023. Spit-spot!

Image by Freepik

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