Sufferers Are More Than Their Afflictions

Lately I’ve had to remind my husband that he is not his disease. Aubrey was diagnosed in 2013 with hereditary ATTR amyloidosis, and after eight years, his impairment has become evident to those closest to him.

Externally, though, Aubrey looks great. A stranger wouldn’t be able to tell how sick he is. That’s because the abnormal amyloid protein disrupts and compromises the internal organs, including his heart, nerves, gastrointestinal tract, and kidneys, causing them to malfunction. He has a long list of medications that he takes to manage his symptoms, and each comes with its own side effects.

But pharmaceutical drugs only help with so much. At the end of the day, he still has to put up with the aches of dragging his ailing body around and the haunting nerve pain that never lets up.

As a caregiver, it may seem callous of me to advise him to separate himself from his sickness. It is, of course, impossible for him to completely disconnect his functional self from his ailing self. If only life were that easy. I intend to plant the seed of possibility — the reminder that when I see him, I am still searching for the determined and hopeful man that I know still exists.

Scottish writer and historian Thomas Carlyle said, “Permanence, perseverance, and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak.”

No matter how challenging things become, we all have a purpose to fulfill and a legacy to leave behind.

This is my goal when I remind Aubrey that he is not his disease. We are not our diagnoses, and we must not let our issues define us. He may be afflicted with amyloidosis, but he is still a man, a friend, a spouse, a dad, a son, and a brother. And each role involves so much more than just the task itself. When the person can no longer fulfill each position, we lose the flow of their influence.

To all sufferers, I hope you can see that you are more than the ways your disease has shaped you. There will be days when you struggle to get out of bed and the neuropathic pains are so bad that you just want it all to end. This can often happen with my husband, and at times like these, I pray for him and let him ride it out. But I also won’t let him wallow in this state for too long.

Understand that when you unconsciously or consciously remove yourself from life as you know it, you are leaving a unique vacuum that no one else can fill. You are important and your life is worth holding on to.

Aubrey celebrates his recent 57th birthday. (Photo by Jaime Christmas)

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Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.