Doesn’t mean I’m terminally ill, confused? I was too.
I still might be, but I think it’s time someone explained what it is to have a terminal rare disease.
With rare disease day approaching, I’d like to do my part in educating about this rare terminal illness I LIVE with everyday.
When I received my grim diagnosis of metastatic pheochromocytoma, it followed with “you have 1-5 years to live”. I was sentenced to death, and given a time frame to live my life. It’s haunted me ever since. It’s shaped how I perceive my world and how I went about living in it.
It didn’t have to be this way…
Delivering a diagnosis should be one of the most sensitive topics there ever is in a career. It should explain the illness you’re facing, and explain how to live with it.
Just because I’m terminally ill doesn’t mean I have to die…
It can take years upon years to die, a terminal illness means you will EVENTUALLY die of that illness, but no one should be signing your death certificate.
Just because I’m terminally ill doesn’t change the standard of care, I want to live. I deserve every treatment, every intervention, every respect that someone else with a chronic condition or just a condition gets.
I’m still living, and should be treated that way.
Just because I’m terminally ill, shouldn’t mean I’m given palliative care to help me die.
It means I should be given palliative care options to help me live, to extend my life, to improve my quality of life.
Just because I’m terminally ill, doesn’t mean I don’t have a beautiful life ahead of me.
It just looks and feels different than yours, but it’s still worth living.
When I was given my grim diagnosis, it’s all I could think about. Everyday, dying. My time was ticking. My rights were being taken away as a normal patient.
Just because I’m terminally ill, doesn’t mean I should sign a DNR to get treatment
Yes, this is illegal. But it didn’t stop the hospitals around me from withdrawing treatment, and making me too scared to call an ambulance when in an emergency because I thought they’d kill me.
Just because I’m terminally ill, shouldn’t mean I had to move three hours away to be close to a hospital who gets this.
It’s so important to have proper, quality, care. Doctors who understand what a terminal illness is, that are willing and excited to treat your rare disease with the respect it deserves. Ready to give you the respect you deserve.
Just because I’m terminally ill doesn’t mean I should have no dignity…
When I was “dying”, I lost my dignity last. I held onto it for quite some time, but eventually it went away. It was the hardest thing to lose, it shouldn’t have happened, but it did. It didn’t have to be this way.
I don’t consider myself dying anymore, I consider myself someone who’s living with a terminal illness.
I consider myself someone who will eventually succumb to this disease, but not for a very long time.
I consider myself someone who’s fought hard and long enough to share this information with you all.
I consider myself someone who can help change the way terminal illness is perceived.
If you receive that grim diagnosis, please, please, don’t give up. There ARE treatments that work.
There IS a way to be stable.
Quality of life CAN be different.
You need support, in all forms, you need palliative care, (proper care), you need a team of doctors who listen and respect you. Most of all.. you need hope. That’s what this gives you, your hope to hold onto and never let go.
Happy rare disease day my fellow warriors,
It’s been a hell of a ride.
Pheo VS Fabulous
Well said, well said. Thank you for posting this!
You are a great inspiration to so many. Well written and thank you.
[…] Plan 5: Oh, plan 3 is starting to work? Not dying in a year? Well, this is a surprise. It’s starting to work! There’s beginning to be changes. Good changes. I’m starting to change the statistics. […]