Understanding the Guilt That Can Accompany Hereditary Disease

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by Jaime Christmas |

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caregiver break | FAP News Today | Main graphic for the column

Our amyloidosis patient association here in New Zealand often holds routine catch-up sessions with the patients and carers that we support. I am a firm believer that mental health is a key aspect of an individual’s well-being.

Providing an avenue for people to share their challenges and difficulties with one another can help them cope with stress while still feeling productive — especially if they’ve been diagnosed with a terminal condition. It’s important to maintain a sense of belonging and feel valued, regardless of one’s health.

My husband, Aubrey, is 56. In 2013, he was diagnosed with hereditary ATTR amyloidosis. Having a hereditary disease somehow hits differently. It is one thing to know and eventually accept that you have an incurable, terminal condition. Acknowledging that your children may also suffer the same fate, however, can result in a landslide of guilt that not many understand.

Guilt can engulf the sufferer. My husband carries his guilt with him. He does not often talk about it with family members, but when he’s in a group setting with other sufferers, he mentions and acknowledges this feeling. He feels guilty about no longer being able to provide or perform, and about being unable to see past the pain he experiences day in and day out. This guilt, if not properly understood, will lead to larger issues.

Canadian psychoanalyst Donald Carveth, PhD, explained in an interview that we experience two types of guilt: persecutory guilt and reparative guilt.

Persecutory guilt is self-inflicted, and over time, the person experiencing it develops a pattern of self-sabotaging behavior. Can a sufferer experience this? Yes, particularly if they are made to feel remorse and shame for having the disease. Any stigmas they encounter can result in them projecting their anger onto others.

Reparative guilt, on the other hand, is amendatory. I believe that patients like my husband who feel bad for passing along the disease to their children carry this guilt. Aubrey wishes that he could do something, anything, to take their suffering away, but because he knows that this is impossible, he compensates by flip-flopping between being overprotective and exceedingly lenient. Enforcing and removing boundaries can become confusing, especially to young children.

I believe that recognizing the two different types of guilt can help sufferers tackle the emotional landslide that often accompanies a hereditary disease. Making this discernment is an important step toward letting go of anguish and welcoming in calmness. It’s a way to appease the inner storm and push the dark clouds away.

“What the devil loves is that vague cloud of unspecified guilt feeling or unspecified virtue by which he lures us into despair or presumption. ‘Details, please?’ is the answer.” – C. S. Lewis


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.


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