Light and Dark: The Mental Health Side of hATTR Amyloidosis

I have hATTR amyloidosis. It is my disease; I own it, and it comes in 2 complementary phases with very little transition between them. One is full of light and life, and an unequaled positivity. The other is dour and debilitating, accompanied by exhaustion and severe questioning of my mental state. Wow, heavy stuff, but that is it: the double-edged sword of rare diseases.

The light side takes in so much energy that it's exhilarating. The dark side, on the other hand, sucks away that energy, leaving me just sitting, unable to move, trying to understand. I often wonder when my older brother finally succumbed to this malady, whether it was the dark side that finally convinced him enough was enough. That scares me.

Mental health and hATTR amyloidosis

In all honesty, I am in one of those dour periods now as I write. This is the best time to address it. “I’m just not feeling that well today,” I tell my wife. The dogs pick up on it right away. I can’t hide from them. Worse, I try to lie to myself, saying, ‘Ah, come on, dude, just get moving; everything’s good.' My body protests. Every possible pain comes to the surface and shouts, ‘STOP FOOL.’

Am I a fool? I have never pampered myself. Just the opposite. Pain from sports was the norm growing up, and I was always nursing one thing or another. However, this is different, deeper. I’m suffering, and I don’t really understand why. That scares me.

My will to live is so strong. But so was my brother’s. He passed away a while ago, and I am fully 10 years older than he was when he died. I can still watch the sun rise in the morning, and the stars shine at night. I can still love my family, dogs, and my life. But this dark discord still hangs around as a combined sound that hurts my ears.

Leaning on my caregiver and support system

This is when I lean most on my caregiver, my wife of 51 years. Just her being here makes all the difference. Our serious discussions, playful banter, and reflection on our long life together. We all need someone. Without this close contact, the dark side would take me and take me quickly.

As Mick Jagger and Keith Richards put it in the Rolling Stones 1969 song “Let It Bleed":

The greatest advice that I can give someone with this disease is to find that person you can lean on. The one with enough empathy to help share this mental burden. The one to be the sounding board to help you make sense of it all. Your symptoms can overwhelm you at times; it’s best to get beyond that and let that caregiver help you realize the value of life and the contribution you can make.

Finding an amyloidosis mentor or support group

If you don’t have someone, find someone. There are a multitude of resources. There may be a local amyloidosis support group. Your amyloidosis doctor may help you find someone. Many pharmaceutical companies and amyloidosis websites offer mentorship programs. I’m a mentor and have been there to help. When you are newly diagnosed, there can be a lot of fear and confusion. Mentors can help you work through it and also help your caregivers and family.

So, when you feel stable again, back to the light like I am now, it is time for you to put yourself out there and offer your shoulder for someone to lean on.