Hello, My Name Is…
I’ve always been outspoken about my health, self-advocacy came naturally to me. When I decided to start blogging there was a rush of things I wanted to say come to mind. I’ve started keeping notes of things to write about it’s starting to get very long.
Where to begin?
Well, it makes sense to start by saying hello and introducing myself right?
I’m in my 30’s which makes me Gen Y apparently. I thought I was Gen X up until studying sociology, that’s where I found out I was actually Gen Y. I was quite taken aback because there was a lot of criticism towards this generation. Criticism regarding their tendency to be lazy and having a sense of entitlement. I was none of those things! Neither were any of my peers. I’ve since realised that each generation endures these kinds of slurs from their predecessors. It must be a right of passage. Baby Boomer to Gen X, Gen X to Gen Y and now it’s Gen Z’s turn. So there you have it I’m Gen Y, and in my late 20’s I was diagnosed with Multiple Sclerosis.
It was such a shock, that seemed to me to be much too young to have Multiple Sclerosis. However, it’s a common age for diagnosis. So I found myself, Gen Y, with a chronic illness which makes me a Millennial Patient.
I was thrust into a world of Baby Boomers as that was the generation of most of my doctors and specialists. Long story short there were many misunderstandings, incorrect assumptions and A LOT of head butting. Why? Because I was rude, disrespectful and didn’t listen to my doctors. Looks like I was living up to those Gen Y stereotypes. I disagreed with them a lot. It felt like the doctors didn’t give me enough time and did not understand me at all. In turn, I found them to be rude and disrespectful to me. They never gave me opportunities for questions and left me confused, frustrated and often times depressed after an appointment. A decent bedside manner was hard to find. I found myself reaching out to the internet many times as each medical appointment left me with more questions than answers.
That is where I discovered online health support. Both kinds, formal and informal, but I really didn’t know the difference at the time. I also dabbled in a lot of self-diagnosis and relied on ‘Dr Google’ for health advice. I went through a very rocky period in the beginning. Especially from information that was not based on research and best practice. There is a lot of misinformation out there. So much word of mouth advice such as, I have a friend who… So, for this reason, this blog will not give you any antidotal medicine.
This brings me to the aim of this blog.
The goal is to share how I managed my life with chronic illness. Those things that I had to learn on my own, like setting up a good support network; when to disclose my condition to an employer or new person in my life; how to start a conversation with my doctor about changing medication. Over time I built up a “Recovery Toolkit”, and life hacks’. I’d like to share these life skills here to provide some ideas for when others are feeling stuck.This blog can also shed light on how millennial patients such as myself engage with health services. The fact is we do things a little differently. Some good, probably much of it is inadvisable.
Finally, through sharing experiences, we can expand our support networks which are universal needs for anyone living with a chronic illness.
So, welcome to my blog and thank you for reading 🤗
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