Telling Others About Your Chronic Kidney Disease
By Contributing Writer and PD Patient Jim McFarlin
People break 40-yard dash records to tell their friends about their personal best golf score or their kid's "all-A" report card. They might race up to a complete stranger to report the news of their first grandchild, or their daughter's wedding. (Not necessarily in that order.)
But to reveal to anybody the slightest details regarding their end-stage renal disease (ESRD) – information that could lead to greater knowledge, deeper understanding, possibly even the lifesaving gift of a donor kidney – they don't like to talk about that in public.
Why is that?
Surely the need for discussion when it comes to kidney disease has never been greater. Every day, more people are diagnosed with some form of Chronic Kidney Disease (CKD) and countless others have CKD but don’t know it yet.
There's no better time to share information and speak up about what you know and what you need. After all, the old saying goes, "you don't ask, you don't get." We all know people who wouldn't whisper, "Water, please," if their pants were on fire, and there's not much we can do for them. The majority of us, however, tend to fall along the lines described above: Happy to talk golf and grandkids, yet loath to mouth a single syllable about crummy kidneys, dialysis options or the serious search for a living organ transplant.
Why do we do that?
Well, the reasons can be myriad as the individuals with renal disease. Shyness. Fear. Insecurity. Self-consciousness. Lack of knowledge about your illness. Not wishing to impose. The sheer magnitude of requesting a donor organ. Detroit business pioneer and author Jacquie Lewis-Kemp, whose book Blessed Assurance: Success Despite the Odds chronicles her journey through juvenile diabetes and subsequent kidney and pancreas transplants, can relate her experiences in graphic detail today. At the time they were taking place, however, she was desperate to avoid "the look."
"Because I was running a company at the time, many would imagine I wouldn't want customers, suppliers, employees or competitors to know of my grave illness, and certainly that was a concern," she says. "But my most immediate reason for keeping my CKD secret was that I couldn't take the sorrowful look on people's faces each time I spoke with them. I knew if I was going to fight this disease, I needed people to treat me as they always had."
Still, you're going to have to tell somebody. It's selfish to keep such news to yourself and away from your loved ones. First, you have to acknowledge that you have a serious illness and come to grips with its realities. Like Elizabeth Kübler-Ross's famous five stages, you may have to go through denial ("This isn't happening to me!"), anger ("Why is this happening to me?"), bargaining ("Lord, if you take this from me, I promise…"), even depression, before accepting of your condition. This is a process, and it's going to take as long as it takes. Don't rush it. You'll know when the time is right to disclose your condition.
If you can, use the intervening time to do as much research as you can about CKD and your specific condition, because knowledge equals confidence and you undoubtedly will be asked a boatload of questions when you make your announcement. The Internet is a wealth of information; you also may wish to consult your nephrologist, dialysis nurse or social worker. If you ultimately find you cannot tell those closest to you, consider confiding in one trusted friend and letting them break the news on your behalf.
Similarly, with the need for a donor kidney, "the primary issue is, it's extremely difficult for most people to ask for help," says Harvey Mysel, founder of the Living Kidney Donor Network (lkdn.org), a not-for-profit organization devoted to educating people in need of kidney transplants. "The old saying that it's better to give than receive holds some truth here."
Mysel, himself the recipient of a living kidney transplant in 2006, says most people feel intimidated that they have to ask someone to give them a kidney. "But if you speak to donors, they say, ‘No one asked me. I heard about so-and-so's need and started asking questions," Mysel says. Once a transplant candidate can make the subtle paradigm shift from "I need a kidney," to "Let me tell you about my situation," the process can become empowering he says.
People are going to ask every day, "How are you feeling?" Mysel notes. Tell them! If you feel awkward doing it face to face, be creative. "You can go to the FedEx website and access templates where you can make a business card that can tell your story," he says. "One woman made a card with a drawing of a kidney wearing boxing gloves on one side, battling against kidney disease, and her history on the other. People start Facebook pages, websites or blogs. The sky's the limit as to what you can do.
And remember, "you don't ask, you don't get."