How Speaking Up as a Young, Chronically Ill Person Changed My Medical Care


I often write and think about how unfair it is to face such health challenges in my 20s when I should be at the prime of my life. It was also my young age that almost didn’t get me diagnosed in time to have preventative surgery. I was too young to be considered to have cancer, instead it was assumed I was just not exercising enough and needed to improve my diet.

On the flip side, I feel that my age has really contributed to me getting such great care and having doctors, nurses, allied health, secretaries, admin staff go the extra mile to make my life easier and digging for treatment options that factor in how much life I have ahead of me.

I’ve been reading about patient-centered care recently, and I feel that my doctors make a real effort to listen to my knowledge of my body, what else is going on in my life, and my ability to know when something is wrong and we need to look into it again. After all, I have been dealing with this for quite some years now. When it comes to big decisions, I ultimately trust my doctors. The conversation is more direct from them, but it is delivered in a way that doesn’t assume I can’t have or want to have a say.

Speaking up and questioning doesn’t come naturally to me. I have a big fear of being seen as difficult, and don’t want my excellent doctors to think I don’t trust them. What I’ve realized though is that through developing a relationship with them, they appreciate that I am fully aware of my condition and what my “normal” is, and encourage me to take a little control over it. As my colorectal surgeon likes to say, “You’re in the driving seat.”

I’ve been seeing my eye doctor for over 15 years now, long before my recent health dramas. In a strange way I’ve grown up through the different stages of my life around my checkups, and there was definitely a rebellious teenager phase where my retina problems were getting in the way of my social life and I would just do anything I like. Now, as a more mature young person (so like, a year ago), whenever I notice something wrong I mention it rather than waiting until it is an emergency. He is relieved by this, because at the end of the day he is only human. If I don’t mention things, there’s no way of knowing if it is a big deal or not.

Then there’s the caring aspect — not just with doctors — but all the other people I have met through the health system that have been so kind and compassionate. I don’t think I would have gotten through the last four years without people like the secretary of my colorectal surgeon. She’s always willing to chase up the surgeon and even chase up other doctors in the system I’m having trouble contacting. It’s particularly amazing now that I have had my surgeries done close to two years ago and only come in for six-month checkups.

I think a lot of it comes down to me being able to relate to people — like their daughter, cousin, or niece. The compassion helps me get through the ordeal of rare disease and chronic illness, so I am glad in some ways to be young and unwell.


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