A Patient Advocate is Not Always the Patient
Liver disease doesn’t just affect the person who is living with it but also the people who love them, the doctors who treat them and the researchers who are working tirelessly for cures. There are many faces of liver disease.
New York Times best-selling author Gretchen Rubin, author of The Happiness Project, Happier at Home and the newly released Better Than Before is one such face. Her husband Jamie contracted hepatitis C as a child. After years of unsuccessful treatments, he received one of the new medications for hepatitis C and was declared virus-free in January of this year.
We recently spoke with Gretchen about her family’s experiences.
ALF: In your books and blogs you have been very open about your husband’s hepatitis C. Why were you so forthcoming?
GR: It never occurred to me not to be. This was what we were facing. This is what a lot of people are facing. It was important to share with readers.
ALF: What has life been like for your family since his diagnosis? Did you approach life differently?
GR: My husband was diagnosed in his early 20s, before we were married, so it was something we were always living with as a couple and later as a family. Of course, we wanted to do everything possible to cure him but it wasn’t the focus of our day-to-day lives. It wasn’t something that haunted us. Our thoughts were that this was the problem and we needed to fix it. But we were also keenly aware that eventually he might need a liver transplant if treatments proved ineffective.
Our two daughters were only dimly aware of his illness. They only noticed that their father would sleep a lot after treatment.
ALF: You have often mentioned the importance of organ donation. And by sharing your family’s story, your readers signed up to be organ donors in large numbers. How happy does that make the happiness expert?
GR: Very happy. Most of my readers – and the majority of Americans in general — support organ donation and know they should sign the organ donor registry but just don’t get around to it. Jamie’s story became personal to them. They could directly see how hepatitis C could necessitate the need for a liver transplant for just one family – ours. So it resonated how many other families could be helped, not just those in need of livers.
ALF: How do you think we can get more people to become organ donors?
GR: We need to make it easy for people and help them understand that with little effort, they can help so many others. It takes less than a minute to do. I find it comforting to be an organ donor and I believe others would too.
I am on the board of LiveOnNY and Organize and one of our goals is to figure out more technological solutions to facilitate organ donation.
ALF: How is your husband now? How are you?
GR: He is great. We are great. There is a happiness I feel that I can’t even assign an emotion to. We don’t know what fate holds for us and yet this fate feels like sliding glass doors. For so many years, we were headed in one direction and then suddenly could change course.
My husband and I are not big drinkers but the normalcy of just being able to order a glass of wine was quite meaningful.
We are so grateful to his extraordinary doctor – Leona Kim-Schluger at New York’s Mount Sinai Medical Center. She gave us such a gift at such a confusing time.
ALF: And finally, what do you say to people who ask you how they can become happier?
GR: I tell people that one of the keys to happiness is strong relationships. This is something that both ancient philosophers and contemporary scientists would agree on. To be happy we have to feel strongly connected to other people. We need a sense of belonging and to feel that we can get support and just as importantly give support.
People are more likely to describe themselves as very happy if they say that they have five people who they can talk to about an important matter.
And strong relationships have tremendous health benefits: it can boost immunity, reduce depression and lengthen life.
Becoming an organ donor is easy. Click here today to learn more and spread the word to your family and friends.
Hear more from Gretchen at www.gretchenrubin.com and on Twitter – @gretchenrubin.
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