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By Sue Dickinson – TAMS Support Chair

At our most recent meeting on Saturday, 25 March 2023, a group of nine members engaged in a positive discussion about the impact of our invisible illness upon ourselves and those around us. Our session was longer than anticipated, and several significant insights emerged from our participants, as summarised below.

  • There was general consensus that each of us had experienced the ‘curse of invisibility’ in various capacities.
  • The ‘curse of invisibility’ can depend upon a number of things, such as where each of us is located on the journey to diagnosis, the degree of our disability, our age, our medications, our connection (successful or otherwise) with medical professionals and the physical/emotional availability of our support systems, be it, family or friends.
  • The fact that mast cell diseases (Mastocytosis, MCAS and HaT) are chronic conditions was also mentioned as a potential barrier to accessing ongoing and meaningful support, given that family and friends can often expect you to be ‘better’ after a period of time. This can raise feelings of grief, frustration and/or despair for the sufferer and similarly for the carer.
  • Feelings evoked by lack of diagnosis, or validation of diagnosis by medical professionals, can also have a negative impact on one’s ability to manage day-to-day, both physically and mentally.
  • ‘Coming out’ to friends after a considerable period of choosing invisibility can bring relief and potentially enable the development of a more positive sense of self and support.
  • Doctors and other medical professionals may also experience a degree of frustration and anxiety because they cannot provide a ‘cure’ for mast cell disease. This can sometimes create a collision of emotions between the sufferer and the doctor and is possibly borne out of their shared frustration in finding a successful disease management programme.
  • Developing a trusting relationship with one’s medical support team was seen as essential and may take some time.
  • Finding medications that help ease the pain of mast cell disease was also considered vitally important. This can often be a ‘roller coaster’ of trial and error and, again, may take considerable time to experience some relief of symptoms. Mast cells are tricksters!
  • Not feeling alone on the journey is a significant help for our mental health.
  • Being more open was generally agreed to contribute to better health.
  • However, time to ‘disappear’ and be quiet and gentle with ourselves can be essential for refuelling our body, mind and spirit.
  • Gratitude was expressed for TAMS in continuing to bring us all together and for having the courage to raise such important aspects of our health and well-being, such as those discussed in this meeting.

On behalf of TAMS, I wish to express our collective gratitude for those who have been able to attend our Zoom Support meetings. Input from our members at these meetings helps TAMS continue to provide relevant and meaningful support to everyone with these complex conditions. We look forward to engaging with you at our next support meeting on Saturday, 24 June 2023, 4 – 5 pm AEST.

Read Sue’s article: The curse of invisibility.

Image by Freepik

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