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How to Share Your Story When You Need a Kidney Donor

EJ Tamez

Being told you need a kidney transplant is overwhelming, and you might be tempted to keep your need for a kidney donor to yourself. Don’t make that mistake. Remember: the more you share your story, the more people you will reach, and the better your chances of finding a living kidney donor.

There are many reasons people might not want to share their story. They may feel embarrassed to share personal medical information, not want to appear weak, or feel uncomfortable asking for help.

Don’t let those concerns or hesitations prevent you from sharing your story. It may not feel comfortable at first, but almost everyone who has initially been reluctant to share their story has been overwhelmed by the love and support they have received when they eventually do.

These tips can help make it easier to share your story.

Share your story in stages. This can make the process more manageable and help you “practice” with the people closest to you. First, tell your immediate family members, then your extended family, then friends and acquaintances.

Compose a group message. If you have a very large family, a wide circle of friends, or friends or family members you don’t see or speak to very often, it’s sometimes easiest to write a group text or email to tell everyone at once. This not only saves time and lets you reach a large number of people quickly, it allows you to compose your thoughts and say exactly what you want to say to each group of people.

Tell people what you’re going through. Potential donors may not realize how your kidney failure has affected your everyday life. Telling them may feel like complaining, but don’t think of it that way. Letting them know what you’re going through will help them understand your situation and may make them more likely to donate on your behalf.

Share your hopes and dreams. What would your life look like if you were to receive a living donor kidney transplant? What’s the first thing you would do? What dreams and goals would you want to achieve? Everyone has dreams. Sharing yours will help people relate to you and make them realize that those dreams may be out of reach for you without a donor.  

Explain why you need a kidney. There are many different reasons for needing a kidney transplant, and people will want to know your story. There’s no need to get into details, but a general overview of what caused your kidney failure will help potential donors understand and empathize with your situation.

Share personal details. You never know what you might have in common with someone, so be as open as you feel comfortable being about your life. On your microsite and in social media posts, write about your hometown, family, hobbies, pets, community service, favorite TV shows or activities—anything that might spark a connection with a potential donor.

Use photos. Whenever you write something about your donor search on your microsite or in social media posts, be sure to include clear, well-lit photos of yourself and your family to help show potential donors who you are. Pictures help you tell your story and encourage people to feel connected to you. In addition, studies show that Facebook posts with photos get two to three times more attention than those without.

Be ready with information. Most potential donors have questions, which can range from why your family members can’t donate to what happens if they aren’t a match for you. Being able to provide basic information on things like the Voucher Program, the donor assistance and protections offered through Donor Shield, what donor surgery involves, how long the recovery time is after donation surgery, and why it doesn’t matter if your potential donor is a match will give potential donors confidence in the process and make them more likely to move forward with donation.

Remember: No share is wasted. If you’ve told your story to dozens, or even hundreds of people and still don’t have a donor, don’t lose hope. Every time you share your story, you are getting one step closer to finding the donor that could change your life.