How Can You Prepare Yourself for Responses?

Nancy Marlin, a kidney transplant recipient, shares some of her personal experience during her journey.

Just as important as it is to be prepared to share your story, it is equally important to be prepared emotionally for how people will respond to your story. Sharing your story usually places you in a vulnerable position emotionally. Sometimes people close to you, who you think would offer to help, will say things like "well, I hope you find a donor" and then change the subject. Such responses can be painful and discouraging and leave you wondering "why about the person. For instance, after sharing my story a friend told me she had already donated her kidney years ago! I learned I could not anticipate how people would respond to my story, but I began to categorize responses and found this helpful. Along the top of the figure (below) is how people responded soon after I shared my story and some additional information about living donation, and along the side of the figure is their long-term response.  

The upper left category are the Angels.  These individuals offer to be evaluated and follow through by contacting the Transplant Center. There truly are angels living among us who want to help when they learn of your need. In the box below are the Impulsives. These are individuals who say they want to be your donor but then do not follow through. They are good-hearted and well-intentioned people, but when they learn what is involved in living donation they decide this is not for them. Impulsives are probably more common on social media connections.  The upper right category are the Reflectives.  These individuals do not offer to help initially.  They are likely researching living donation on their own or need to hear more about your need and your health over time.   After some time - and it may be a long time - they do offer.

The final and very large category is on the lower right.  These individuals do not offer in the short-term nor in the long-term.  As difficult as it is, it is important to understand that their decision does not mean that they don't care about you; it only means that for whatever reason, living kidney donation is not for them and they will not be donors.  

Being prepared to be respectful of each person's response and decision will allow you to continue in the process of sharing your story despite the inevitable setbacks.  And even though people might not be interested in donation, you can always ask if they would help share your story - which they usually will agree to do.

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