The Power of Kindness for a Person With Rare Disease

Our culture obsesses over the “perfect” physical body, so it’s no surprise to those of us who endure rare disease that kindness is often not the response we usually expect or receive when people ask us about our health and bodies, or about the health and bodies of our children with rare disease.

During this current Passover, my husband and I were so thankful for unexpected acts of kindness since I battle a rare neuromuscular disease and am just out of surgery. Some friends surprised us with grocery deliveries, but they quickly departed when we invited them in to chat or even to eat with us. We are keenly aware my rare disease, SPS, makes folks nervous and anxious, and the cause of their feelings is too often judgment. Three dear friends remembered us and sent cards with generous gifts inside, and we never expected those acts of kindness.

My husband received an email at work from a colleague that was a blindside in the midst of the kind acts we just received. This colleague wrote I should call her church’s prayer line for healing and included the number and promotion of her church. This was unsolicited and in the knowledge we are Jewish. Rare disease patients have to hear this “better pray it away” commentary too frequently. It simply feels absent of heart. Ironically, this colleague had been the recipient of my husband’s kindness and help at work and yet, he had to encounter this again. His response was “thank you, but we have a direct line to God.” No reply, of course.

This “prayers for you” approach is utilized too often as an excuse not to do anything for people who are struggling or sick with incurable rare disease, who maybe need your help but sense they would regret asking you for it. I believe genuine prayer is a beautiful and powerful gift. I just have to say it is too sacred to be an excuse not to really do anything for the most ignored and neglected in our society, especially rare disease patients. The presumed or forced Christianity also is unkind, particularly if folks know you hold a different faith or your own spirituality or none at all. Spirituality helps a lot of rare disease warriors and I believe kindness is an act or actions, not only a prayer or a prayer intended to dismiss our struggling so that nothing else is needed.

Throughout Passover and this Easter Sunday, please consider what true kindness means. Remember it can be the profound difference in the lives of rare disease patients and their families who battle every day without much medical help or hope. My husband embodies kindness. He will drop everything to assist me with anything, particularly after surgery on top of my rare neuromuscular disease struggling. I do the same for him, no matter what. We are a team, and we believe in the tremendous gift of kindness. We have been very fortunate to receive acts of kindness and to be able to offer them.

Kindness is not owned by any religion or any one person. It is a potent force of goodness inside each of us. I regret being so incurably ill that I cannot give more, do more, help others more, live out my kindness more. I realize it’s because as a rare disease patient out of surgery and heading into my next procedure, I need to give kindness to myself, especially in a world that is often hostile or indifferent to disabled rare disease warriors. It is vital we give kindness to ourselves! We struggle enough with our diseases, the battle of treatments and from the cruelty of others. All the more reason we need to cultivate self-care, self-love and compassion for ourselves. It is an ongoing practice to be kind to yourself when you are incurably ill. Without offering kindness to ourselves, negativity feeds off of our illness and isolation.

This does not mean the people in your life should not step up and do right by you. It means we remember to act kindly with ourselves in a culture regularly downright violent to disabled rare disease patients, stories we see daily on local and national news. However, we also see beautiful stories of breathtaking goodness toward rare disease adults and children. These selfless actions change lives forever. Kindness is positive action. It dispels nastiness. It has the power to transform a family’s or an individual’s most horrific time into a time of strength with the loving help of people who care.

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Thinkstock photo via Leks_Laputin.

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