I look at PKD as a family disease. For those of us who are not victims of a spontaneous mutation of PKD, it is likely that we are surrounded by numerous family members who are battling the same disease. One would think that we’d have great support surrounding us, but sometimes it’s hard to talk to–and support–our loved ones who battle PKD when we are in the trenches with it, too.
For the first 10 years of my life prior to my diagnosis, I did not know what PKD was and never heard those three letters spoken together. Even though my mom has PKD and I lost my grandmother because of the disease before I was born and many other of my relatives have died from PKD, I never remember this being talked about. I don’t blame my parents, because why did I need to learn at such a young age that my mom was living with a disease for which there is no treatment and no cure, let alone that I myself could one day inherit it, too?
There are many emotional facets to PKD. I know my mom faults herself for passing this disease on to me, but I’ve never looked at it that way because her mother passed it on to her. There is no reason to think it is someone’s fault. I never once was angry at my mom for inheriting PKD. I know she also wishes she would have been the one to endure everything that I have from this awful disease instead of me going through it.
My Aunt Donna, who didn’t live close to us, also had PKD. I remember her coming to visit us for a week and seeing her sit on the floor with a Ziploc bag full of meds. I knew she had PKD but we didn’t talk about it. I wish we had, because she decided to not pursue dialysis or transplantation and passed away shortly after this visit.
For some family members, it may be so difficult to endure the disease themselves, that they can’t handle watching their loved ones suffer from it, too. Maybe some parents are devastated that they passed this disease on to their child and are too emotional to talk about it with their children. Or perhaps they struggle with denial and they can’t face what their future may be like.
Sometimes support needs to come from outside our inner circle, from people who live with PKD but aren’t related to us or are mere acquaintances. Since some of us are surrounded by family members battling the same issues, one may think we are guaranteed to have the beneficial support we need, but that isn’t always the case. It is important to not fight PKD alone. I encourage you to seek support, whether it is with your family, friends and/or in your community.
Do you talk openly about PKD within your family? Where does your support come from?