Lamentations Let Us Move On to Strength

Every week I write my column using my personal experience as a caregiver to a spouse diagnosed with hereditary ATTR amyloidosis. Writing demonstrates my competence to reflect on my words and actions. I can celebrate my strength and tenacity in carrying my responsibilities as a mother to four children, my work as a patient advocate, and of course, as a caregiver.

Some of my behavior I regret. But now I am also more conscious that my situation, so heavily influenced by the disease, is no one’s fault. Still, I blame amyloidosis for the breakdowns in communication, the disruptions to otherwise perfect matrimony, and the turmoil it brings to my life.

hATTR amyloidosis is a vicious beast that refuses to leave. It entrenches itself into every fiber of your being. In the sufferer, it takes the form of the misfolded protein, whereas in the caregiver, it takes the form of an unseen wraith that wants to envelop me in discontent, failure, and grief. Neither of us can entirely run away from this burden since escaping would amount to death or bitterness.

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My song and dance with this wraith started in 2013, when my husband, Aubrey, was diagnosed. Looking back, I know that overall, I’ve done well. Just becoming a columnist who shares a caregiver’s perspective is an achievement. When I reflect and recount, however, I am healing through my lamentations.

Synonyms for lamenting include complaining, moaning, wailing, and sobbing. Perhaps I need to cry and sometimes moan to feel better, but I have never been one for outright emotional expression. Still, lamenting can be cathartic. The critical factor about lamentation is allowing ourselves to release pent-up emotions. It’s the reset button I need to come write again. I write; therefore, I am. What’s your outlet of release?

Lamenting is good for mental well-being. As caregivers, we cannot keep our thoughts and feelings bottled up all the time. The stress is harmful to ourselves and the person we’re caring for. Openly expressing how we feel — anger, disappointments, frustrations, and hurts — is essential and nothing to be embarrassed about.

Caregiving is challenging and complex. Why does it have to happen to us? What did we do to deserve this? How is it fair to see our loved ones deteriorate before us? These are all hard questions, and ones that I am sure we have asked ourselves on many occasions. Let me tell you, there is no easy answer.

So, let’s cut ourselves some slack. Sharing one another’s pain and suffering will result in comfort and perhaps solace. Find that lament you need and let go. Then pick yourself up and carry on.

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.