How Caregivers Can Cultivate Endurance and Find Purpose

The 3rd European ATTR Amyloidosis Meeting for Patients and Doctors was held virtually on Sept. 6-8. Because the New Zealand Amyloidosis Patients Association, which I lead, is associated with the Amyloidosis Alliance, we were invited to participate in this global, online event.

If not for COVID-19 travel restrictions, I am sure that we would have all enjoyed meeting one another in person. It is hard to believe that my husband, Aubrey, and I had the opportunity to do just that in 2019, when we attended the second meeting in Berlin, Germany.

The coming together of patients, caregivers, healthcare practitioners, and pharmaceutical representatives is pivotal in better managing and treating ATTR amyloidosis. Although there’s no cure yet, efforts to find one are underway.

ATTR amyloidosis is an awful disease that affects almost every facet of the sufferer’s life. Amyloid fibrils made up of the protein transthyretin build up in various organs, causing damage. The physical effects can then influence one’s mental and emotional state. The impact becomes huge, because the disease also touches the lives of family members and friends.

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Therefore, I feel it is essential to be present anytime there’s an opportunity to connect with the larger amyloidosis or rare disease communities. I am not only attending as the leader of our New Zealand patient association, but as a caregiver to a spouse who has hereditary ATTR amyloidosis, a mother, and someone who wants to leave a positive legacy. I never want to be boxed in by constant desperation and hopelessness. I want to break through the enacted barriers and champion hope for myself and others like me.

Circumstances can either direct us toward restoration or depletion. Disappointments and setbacks happen. How we respond to an experience can determine the outcome.

Yet, many believe that finding happiness and true meaning in life are esoteric pursuits. Personally, I don’t think that there is anything mystical about discovering the meaning of life. The truth is there for us to notice.

Life’s meaning and my purpose have been staring me in the face all along. They are also looking right at you, if only you can be brave enough to recognize and accept them. You are the untapped source that can make a positive change in your environment.

If you are a caregiver to a loved one or a patient, I would like to share three ways I’ve cultivated endurance, which allows me to run a good race in life. Perhaps the following can help you, too.

Look beyond your circumstances

There are times when the situation you’re facing is so challenging that you can’t find a moment to pause and reflect. When this happens, talk to someone you trust. Share what you’re going through, and be honest about it. Opening up to a good listener is cathartic and helpful. The person listening can provide insight into areas you may be blind to in your desperation. They can see the positives, which can help you recover.

Start looking for purpose

In our pain and despair, it can be challenging to break free and be positive. However, remind yourself that even in your present situation, there are reasons to live. You are more than your pain. There are people around you who love you and need you.

Surround yourself with love

Cultivate meaningful relationships with people, especially the ones who are on a similar journey. Never give up on forging deep connections with those around you, because these meaningful connections can extend beyond actions and thought. Relationships are crucial in finding purpose through the pain.

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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.