Help connect those near and far when it matters most. caringb.org/eM
Navigating a diagnosis and treatment plan can be frustrating and confusing. But what if you could take steps to be a great advocate for yourself or a loved one? Dr. Emil Lou, an oncologist with a passion for patient advocacy, shares some tips below.
Patient Advocacy Tips
Take a Deep Breath. When someone is diagnosed, it’s a natural reaction to be nervous or overwhelmed. Don’t let that stop you from taking the time to find the right path and the right care team for you.
Build Your Care Team. It’s important to find someone that you click with—they should fit your personality and it should feel like a partnership.
Get a Second Opinion. It’s never wrong. I strongly encourage it, especially in complicated cases.
Keep Track of Your Records. Make sure you know where your records are and send them well in advance of an appointment. I might even coordinate care in advance, so everything is lined up before you come in.
Maximize Your Visits. Set an agenda of what you want to talk about. Rank the issues—often, not everything can get solved in one sitting. We can then tackle the most pressing ones first.
Avoid Dr. Google. I tell students and colleagues, just because it’s published doesn’t mean it’s true. It’s often a patient’s first instinct to Google in a panic. But sometimes that data is outdated, untrue, or irrelevant to your case.
Understand Medication. I tell people to put all the bottles they are taking pills from in a plastic bag and bring them to the appointment. Then we take them out and they show me exactly how many of each they are taking. Sometimes you’ve misunderstood the directions on taking them. Sometimes a doctor wasn’t clear. This makes it clear.
Write Down Questions. Every patient says, “I had questions but now I can’t remember what they are.” Keep a log or pocket notebook with you that you can write down thoughts or questions as they occur. You can also ask your doctor to send you home with his notes. And, above all, don’t be afraid to ask for clarification if you don’t understand something.
Call. Every clinic is structured differently, but in my clinic someone picks up the phone. That’s where our partnership comes in. If my nurse answers a call and I’m needed, she pages me and we solve the problem in real time.
Demand Privacy. If you have someone join you at an appointment, it’s OK to ask them to leave to have a private conversation with your doctor.
Be Honest. Don’t leave out any information about medications you may be taking or other activities that could impact your health. It’s important to me to know whether something might interact with your chemo, for example.
Ask What You Can Do. The best question you can ask a nurse or patient coordinator is this: What do you need for the doctor to help make decisions at the time I am seen? 95 percent or more of your care happens behind the scenes, not at your appointment.
Show Up on Time. If you show up early, I might even see you early. Getting checked in and settled keeps you calm, which leads to a clearer mind during your appointment.
For those who are experiencing pain or loss, the holidays can be a sticky wicket. For the past few Christmases, my family has had to find ways to face the happiest time of year, during one of the darkest seasons – my husband’s battle with ALS. It’s been an imperfect process, but I hope our discoveries can help you and your family if sickness or sorrow is dimming the glow of your celebration.
Annoying Happy People
One of the most important and surprising things I discovered as I entered my first Christmas post-diagnosis is this: Even though I am unbearably sad, happy people still exist, and they are sometimes annoying. At a time when it felt like my world was falling apart, it seemed impossible that the rest of the world just kept spinning like nothing had changed. Television commercials were filled with smiling shoppers while the department store aisles rang with the sounds of relentlessly cheerful music. Friends launched thirty-day Facebook status updates expressing daily gratitude for their happy, healthy lives. Around every corner was another reminder that we were not normal. We had no place in the picture-perfect Norman Rockwell Christmas scenes.
The Best Advice Ever
I mentioned this to a friend one day, saying, “The Happies are everywhere.” I may have seemed a little angry in my delivery, because she grabbed my hand, looked me in the eyes and gave me the best advice ever: “I know you want to resent all the Happies right now, Bo, but you can’t. You have to stay out of the ditch.”
Stay out of the ditch. She was exactly right. Using energy to envy the holidays of others will always, always lead to an emotional ditch. My husband is dying from a disease that is cruel beyond telling; no one would argue with my right to move into the ditch of resentment, but no one is going to move in with me, because it’s dark and sad in there.
Focusing on Gratitude
Instead of resentment, I am trying to reorient my thinking towards gratitude. I am thankful for my family and friends, for food and shelter and safety. I am thankful for hope and strength to face the day. I am thankful for the love I have known in my life and the ways that love makes me feel alive. Oh, there are so many things for which to be thankful, I can’t even begin to list them all, but it’s fun to try.
If you’re facing sorrow this Christmas and are struggling to be nice to the Happies in your life, this might be a good time to start a list of your own. Gratitude does not cancel out grief, but it does help us stay out of the ditch of resentment.
CaringBridge has been a lifeline for his family to talk about their hopes and fears and get the help they've needed to get through their journey.
Get an inside peek at how their healing process has come along: http://caringb.org/eR
For Kimberly Wright, CaringBridge was the lifeline her family needed after her father, Tom Ess, was diagnosed with colon cancer.
How CaringBridge Helped
CaringBridge assisted Tom’s family in two ways.
First, his family was able to quickly and easily get updates out to family and friends. According to Kimberly, without CaringBridge her mom and dad would never have been able to physically and emotionally communicate everything that was happening.
Second, the CaringBridge Guestbook comments gave Tom the encouragement, motivation and hope he needed to continue his cancer journey. Kimberly says, “CaringBridge allowed both my parents to feel the love of others when they needed it most during this very difficult trial.”
Tom beat all the odds and lived for three years after his initial diagnosis. After his funeral, Tom’s family found great comfort in those that continued to leave supportive and loving comments on his CaringBridge website.
Raising Awareness Worldwide
After Tom’s passing, Kimberly wanted to spread the word about CaringBridge around the globe. To raise awareness, Kimberly and her daughter Haley decided to walk the Camino de Santiago, wearing CaringBridge shirts each day.
The Camino de Santiago is a 500 mile trail that begins in the French Pyrenees and ends at Santiago de Compostela in northwestern Spain. People from all over the world come to walk the grueling Camino path for a variety of reasons including outdoor exploration, exercise, and spiritual and religious pilgrimage.
The Most Rewarding Part
For Kimberly and Hailey, the most rewarding part of their journey was meeting people from every corner of the globe and chatting to them about CaringBridge. As they encountered people from South Africa, Australia, Belgium, Germany, France, Spain, Argentina, England, the United States and many other countries, they told everyone about the benefits of using Caringbridge.
Nearly everyone they met had never heard of CaringBridge. According to Kimberly, once they were told about CaringBridge, many replied that they had a friend or family member that could use it. Additionally, people were impressed that creating a personal website was available to anyone, anywhere at no cost.
Kimberly says, “Hopefully, through our efforts spreading the word, many more people from all over the world will be able to experience the healing and hope that CaringBridge provides to those who are in the midst of a challenging journey.”
All the best,
The day before my husband and I flew to Ethiopia to meet our new two-year-old daughter and three-year-old son, we needed to fulfill one last adoption agency requirement: a full day of training on “adopting the older child.” I will always be grateful to our instructors, a pair of veteran adoptive moms, who candidly offered up their knowledge, insight, and even a few of their regrets.
“Looking back, I wish I hadn’t shared so much of my child’s personal history with others,” one of our teachers confessed. “If I could do it over, I’d be much more discreet.”
Let Your Child Tell Their Story
Respecting your adopted child’s privacy emerged as the key topic that day. “Your child didn’t choose to be adopted,” we were told. “At least let her control who gets to hear her story, and when they get to hear it.”
Today, as the mother of two preteens and a teenage daughter (also adopted), that old advice remains resonant. We’ve always talked openly at home about the lives our children lived before joining our family, but my husband and I have mastered the art of politely deflecting questions from curious outsiders, and we let our kids choose who is privy to their most personal information.
Managing Online Privacy
But what if you’re a proud mom or dad who just wants to blog and share photos with friends and family for fun? Or a struggling parent who wants to connect with other adoptive families dealing with the same issues? One thorny topic our teachers didn’t address back in 2006 was managing privacy online.
Even if you think that no one beyond your inner circle will ever read your little adoption blog or follow your tweets, it’s wise to keep in mind that once an anecdote about your son or a snapshot of your daughter is released on the Internet, you have lost control of it forever. The safest option for parents is finding an online platform with clear privacy controls: a secret, invitation-only Facebook group; a password-protected blog; a secure CaringBridge website; or simply an old-fashioned email sent only to people you personally know.
Advice for New Adoptive Parents
We live in a time in which privacy is shrinking, and while it may be tempting to share every cute photo of your child on Instagram, or to crowd source solutions to every parenting quandary on your Facebook page, your first priority should always be making choices that nurture and promote a loving and respectful relationship with your child. I encourage you to follow the great advice that I received as a new adoptive parent and as your child grows, let them take an active role in determining how their story is told and shared.
CaringBridge is a nonprofit that supports love and connection when it matters most, during a health journey. We provide personal, protected websites where you can share updates, receive messages of encouragement and coordinate everyday help.
We believe that in times of need, the greatest source of hope and healing is the love of family and friends. Thanks to the compassion and generosity of our donors and volunteers, CaringBridge connects and serves millions of people each year.
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