Every term on the last day of school I would always do a protective behaviours lesson with my class. These lessons aim to ensure that students go into the holidays knowing that nothing is so bad that they cannot tell someone about it. The main objective is to allow students to identify five people that they can go to for help. These people all have one thing in common to the students; they are people who can be trusted and depended on.
I have created many Personal Safety Networks of my own during demonstrations to my classes, always being careful to draw attention to my selective criteria and reasoning for each person.
Can I easily assess them? Do i feel safe with them? Do I feel like they listen to me?
It is only after years of battling with chronic illness that I have actually really thought about my own Personal Safety Network. I realised that just as much as i was telling my students that they had the right to be listened to and feel safe, that I too had exactly the same right.
Family
The very first group on my network was an obvious. Always my number one supporters, and more than often the much needed devils advocate. The first to notice when things aren't okay and also the first to give me a much needed push when I have given up.
My mum, grandmother (Nonna) and husband (Jason) have numerous times dropped everything to rush to the hospital when I've had a turn and are experts at not showing me how worried they really are. They get angry at me when i'm not trying my best to look after myself and they give me reasons to get out of the house so i am not spending days on end alone with my cat.
In fact, it is my family i need to thank for forcing me to get help for my obsessive tendencies when i was a teenager, finding a doctor who would take my pelvic pain issues seriously (and go on to diagnose and treat me for Endometriosis) and to keep pushing for answers as to why i was experiencing stroke like symptoms at only 29 years of age. They are the ones who will ask the doctor's the questions i forget to ask (or don't want to ask) and numerous times a day ask me how i am feeling.
I know it must be very hard for my family members to see me so sick, and i know sometimes it must just be easier for them to just pretend that i'm not but they don't and for that i say thank you.
Old Friends
I have sadly heard many a story about people being chronically ill and as a result looking around and seeing that many of the people previously in their life are no longer around. It can be hard to keep friends when you constantly need to cancel plans last minute, aren't able to be there for people when you want to be and no longer seem to have the same values and attitudes that you use to have. You see, being chronically ill changes you. Whether it be for the better or worse, like any major life change, people seem to get left behind in the transition. This can be upsetting especially when you are so desperately tying to hang on to the life you use to have and keep some sense of normally in your new chronically ill world.
I have been so lucky to have had so many of my old friendships strengthened. I am sure there have been many times that I have caused audible sighs when a friend has opened a message to see that an hour before we are meant to meet that i have suddenly not been able to make it but their inconvenience has never been shown to me and they always make the effort to still make me feel a special part of their life.
I am so incredibly blessed to have a tight group of friends who always text to see how i am, pop in with surprises when i've had an especially tough week and most importantly treat me just the same as they always have (of course, making sure that my health is still being maintained).
Thank you to all my old friends.
New Friends
Being diagnosed with any disease, let alone a rare one, can be very isolating. It's hard to not have your health issues overtake your life and it's nice to be able to talk to someone who has some experience with what you are going through.
This is why my number one recommendation for anyone who is newly diagnosed with a disease or illness is to look for support groups in your own local area or online. I am so lucky to have found a wonderful online community to support my Myaesthenia Gravis journey and i find so much comfort in being able to know that advice and comfort is only a short message away no matter what time of the night or day it may be.
Thank you to all of my new friends for your strength, courage and knowledge.
Medical Team
Without a medical team that you can trust and assess whenever needed, a life with chronic illness is going to be not only incredibly difficult but also completely overwhelming and frustrating.
I am lucky to have finally found an amazing medical team who I completely trust and know they want what is best for me. They don't look at me as a textbook case but a whole person with a multitude of autoimmune diseases and mental health issues. Most importantly they look at me as a person not just my illnesses.
This however has not always been the case. I have had a GP who told me that i was just a girl who "couldn't handle pain" after giving myself a concussion from passing out and smashing my head on the ground from Endometriosis related pain and a neurologist who refused to give me further testing because although i was symptomatic of what she thought I had i didn't fit the standard textbook criteria. I even had a specialist convince me into having a surgery and do it leaving traces of the disease I saw her for all throughout my body giving me zero relief and a letter saying I was completely healthy and had no reason for pain.
Thank goodness that's all in the past and I now have the an incredible medical team who give me all the time of day i need, call me to check up on me weekly and give me options not dead ends.
Yourself!
Last, but most importantly, on my network is myself because at the end of the day if you don't have yourself as your biggest motivator and supporter then your journey to self improvement and recovery is only going to get so far.
Chronically ill or not, why not take the time today to reflect on your Safety Network and say thanks to those amazing people in your life.
Love, Jessica Yasmin xo
I have included a great, brief and easy to read resource about Protective Behaviours by the Catholic Education Office of Toowoomba you may like to check out for your own use http://www.twb.catholic.edu.au/Documents/Protective%20Behaviours.pdf