The Emotional Side of the Magic Convention

I decided that I'd separate off the emotional information and experiences from the more technical ones of yesterday's post.  I'll start by sharing some notes I took as Catherine Jonas, LMFT, CMC from The Pituitary Center at Cedars-Sinai Medical Center spoke on "Tools for Coping with my Pituitary Disorder."

• Coping Mechanisms:

  Fighting Spirit 

  Avoidance/Denial 

  Fatalism 

  Helplessness/Hopelessness 

  Anxious Preoccupation

• Most of us fluctuate between these various coping mechanisms, and they can all be useful and worthwhile to get us through a hard situation as long as we don't get stuck in one long-term.
• Other good methods of coping are: problem solving, decision making, seeking info and setting goals.
• Remember to engage in pleasant activities --things that make you happy or bring you joy.  Not everything should be about your disease and limitations.
• We often deny ourselves positive experiences and happiness by almost-instantaneous irrational thought processes.  It is good to recognize them for what they are so that we do not isolate ourselves and limit our chances for support and enjoyment.
• How to differentiate between rational and irrational thinking:

  1.  Is it based in fact?

  2.  Is it/does it bring an emotion I want?

  3.  Does it help me reach my goals?

An example of the latter was:  I'm invited to attend a wedding.  Immediate, irrational thought: I can't go because I won't ever find a dress that will fit me/that I will look good in.  Is it fact?  Does it bring positive emotions?  Does it help reach goals?  We do this to ourselves so often.  There are many health-related reasons that we are in isolation much of the time, but she suggested that we get out of our comfort zones just a little, and don't limit ourselves more than we have to.  There is a difference between knowing our boundaries and healthy limitations (physical and emotional energy, etc), and shutting ourselves off from what could be positive experiences because of irrational, unhelpful thoughts.


I have to say, despite all the stress and exertion it took for me to get to the convention (I had a lot of travelling on my own, plus an MRI and doctor's appointment) and the heat and humidity that made me feel ill while there, I am BEYOND happy that I went.  I plan to NEVER travel alone again, maybe for life (ha ha) because of how sick I felt the first few days, BUT it was worth it all.  I cannot truly explain how it felt to be there.  I had a decent understanding of my disease and the endocrine system (not perfect, just decent) before I went.  I did learn a lot of valuable information, and it was so validating to hear it spoken by national experts from large, recognized hospitals and institutions.  Still, what I most cherish from my time at the Magic Convention is the time I had with others like me.  They are "my people" as my friend JennyZ would say.  I cannot express the immediate bond that I felt with those fighting this disease just like me; we really are like family.  I felt safe and comfortable with them and that is a HUGE deal.  I didn't have to put on pretenses, deal with dirty looks or judgment, didn't have to pretend I had more energy or was happier than I really was, didn't have to stand up for myself and explain my illness...They just got it.  I've met my best friends on the internet via Cushing's support groups --and they are a very, very real part of my life.  Now I've been able to meet some of them in person, and I pray they will forever stay part of my family.  I could talk about this for hours and still not get across the immense feeling of acceptance, friendship, companionship, even relief that I felt there this weekend.  I am not alone.


Some funny tid-bits from the convention to shed a little light on what I mean:

• The convention was changed from 2 full days of presentations to 3 roughly half days of presentations because it was too exhausting for us patients in attendance...That tells you something right there!
• It was COMPLETELY normal and acceptable to go take a nap between lunch and dinner.  It was NOT considered being antisocial or lazy, but "necessary" to be able to get up for dinner and function the following day.
• Every day (often multiple times a day), we would have to re-ask others' names.  It wasn't considered rude --EVERYONE did it.  And yes, we wore name tags.  LOL!