Amyloidosis is bad, but after reaching the bottom I found the good in it

Hi, I’m João, 26 years, living in Caldas da Rainha, Portugal. I’m a Lead Product Designer at Talkdesk.

And, this is my testimonial.
I always felt like amyloidosis has changed my life for good and bad. And if you are familiar with what amyloidosis is, you are probably thinking: « what could be the good part of it? » or simply that I’m crazy. Well, yea… we will get there but let’s start from the beginning.

The beginning was… bad. Very bad. I had a feeling very young that I already had some condition, that I was « special »; therefore, I started growing up really quick — I was afraid of not living enough. Actually, I still am. I feel that I have this feeling of running since I was probably thirteen years old, but I never told my parents how I felt about life. About a condition that I knew I could have.
For a child? It’s tough. Real tough.

In day-to-day life, this would translate in me with fourteen years asking my mother how to cook, sew by hand, manage money, and many other things.

I grew up knowing that my mother had a « special » condition, that I could not meet my grandfather. And also grew up living and doing things thinking that I would die too soon. But my family kept this away from me. It was a big taboo, a topic that no one wanted to speak about. I never felt it was their fault, but my family assumed in their heads that they didn’t need to speak about it because I was free from it. But I was not.

So, growing up like this teaches us a lot of things. But it comes with a price, right? I developed other problems like anxiety, arrhythmias, and IBS. Only bad things I know. But we will get to the good ones.

I really knew that I had this condition when I was around twenty years old. I call it the confirmation day. Until here, I thought that I knew what it was like coping with its reality because I assumed that I had this condition since I was young, right? It ends up that I had no clue of what a blood test confirmation saying that I have familial amyloidosis could mean. On this day, when I got the results, It was like the world was just falling apart. This was it. I crushed, hard.

The following year was not my best. Messed up relationships, I tried to fill my days with everything to try not to think. And the worst part, I felt alone.

I was someone that was always with friends and lots of people. But, still, I felt really alone because I didn’t want to reach out to them. I was afraid of exposing myself and being honest. Actually, I was afraid of many things, and somehow I could not speak with anyone.

Nothing was right. I knew people with amyloidosis that were not so older and were dying. I kept thinking about when it would be my turn. The rage about it also kicked in, and I placed part of that rage on the cuts I did on my arms, on working until night and filling my life with everything.

At a certain point, I showed that I was not Ok. That I needed help. So I went to therapy. I still do therapy, and I feel that It saved my life. It gave me back happiness. It helped me look at the good things and try to cope with the bad ones.

So the good things already happened during this time, but I could only look at them after I recover from my depression. And after recovering, more good things happened, and I can also share some.

For me having a condition that can put an expiration date on you led me to grow up so quickly! Nothing could stop me. I always aimed to try my best at everything I did. So I ended up being the best student in my classes, having an intellectual mind sooner, which led to my teachers call my parents, saying: « Your son is not normal for his age!! ». And yea, I was not.

It led me to travel without fears, try new things, know more people and help others.

It turned me into a super growth mindset. I started working when I was seventeen years old, bought my first house when I was eighteen, then sold it and bought a bigger one. Then moved to another city, sold the old one and bought a new one. It may seem silly, but I’m only twenty-six years, and I accomplished a lot. I feel that without this condition, I probably would not have accomplished so many things. It made me move fast and gave me an enormous push — that was the fear of not having enough time.

This can be the least healthy way to complete your objectives or do things in life, but now, after many years of therapy, I learned to control that impulse and use it wisely.

So I stop running. Well… not properly stopped, but I think I was able to decelerate. When I say running, I mean trying to do as many things as possible because guess what? I don’t know when my last day is, and it could be sooner than I wish. But doesn’t it happen with many of us with or without amyloidosis?

Having this condition also led me to be a more empathic person, fight for what is right and do everything I can to see a better world for every one of us. It makes you see things differently, with more love, passion and living intensely. Some would say that this is the only way of really living.

So it was not everything bad, right? And I already lived a lot, and I hope to live a lot more.

Thanks for being able to share this with you. Telling a bit of my story eases the pain of living with it.

Amyloidosis is bad, but after reaching the bottom I found the good in it – Joao – Portugal