CaringBridge Staff | 09.08.21
Getting a diagnosis can be overwhelming and scary. There are so many unknowns that it can be hard to stay calm. If you don’t know where to start, we’ve got you covered. Here is some advice from CaringBridge users who have been through their own health journeys on what to keep in mind once you’ve been diagnosed.
Shift Your Perspective
Be prepared for your perspective and priorities in life to change a bit. Things are changing for you, and that’s okay. A diagnosis can be a lot to take in at once, but as you begin to process, try to acknowledge and accept that your life is going to be different from now on. And remember, different doesn’t necessarily mean it will all be bad. There will be positive moments and changes in your life was you go on this journey.
“Feel the weight of it. Don’t negate it. You’re going through something big. And it’s challenging. And it’s going to push you at times, past your limits. But man, celebrate those little things.”
Doug O’Donnell., whose son, Davis, was diagnosed at 4 months with retinoblastoma (eye cancer)
“Once I understood and accepted my new limitations, I was able to find happiness in things I could currently accomplish. I embraced this post-diagnosis woman, one who exuded strength, resilience and vigor.”
Chanel W., a young woman battling Systemic Scleroderma, among many other conditions
Find and Use Your Support System
Find a group of people to walk beside you. Whether it’s a support group of people who are going through similar experiences or your friends and family. Having a strong system of support that you can talk to, and who can help you with whatever you need is important when going through a health journey. They can help you feel less lonely and isolated, and their presence in your life can give you someone with whom you can talk openly and honestly with about what you’re going through.
“As a caregiver, I would share with you, reach out. Figure out what your role is and ask people to be a food person, be the 2:00 a.m. telephone person, be the just go for a walk person. Just find ways to connect because 100 people at your door with a lasagna is not going to be helpful.” – Peter Bailey, whose wife, Tanya, was diagnosed with throat cancer
“I was very, very grateful to have a mentor of a heart mom. Friends of ours connected us to another couple that had a heart child and it was tremendous to get the insight and the guidance that they had for us.”
Brittany Hammond, whose son, Deacon, was born with a rare congenital heart defect
“As a caregiver, I would share with you, reach out. Figure out what your role is and ask people to be a food person, be the 2:00 a.m. telephone person, be the just go for a walk person. Just find ways to connect because 100 people at your door with a lasagna is not going to be helpful.”
Peter Bailey, whose wife, Tanya, was diagnosed with throat cancer
Tour the Hospital and Meet With Your Team
Get comfortable with the environment where you’re going to be spending time. If you can, tour the hospital(s) and/or treatment center(s) where you will be receiving your treatment. Getting a lay of the land will not only help you feel more comfortable with your new surroundings but will also give you a chance to meet the doctors and nurses who will be with you throughout your treatment.
Meeting the people who will be treating you and seeing these places yourself will help you ease initial nervousness about the newness of this experience and give you a chance to ask your doctors and nurses and preliminary questions you may have.
“Touring the NICU was a very positive experience for us and if that is available to you then use it. We got to meet his doctors, we got to feel comfortable with the people that were taking care of our child, we got to see where we were going to be.”
Stephanie Kruciak, whose son, Kaden, was diagnosed with a congenital diaphragmatic hernia before he was born
Write Everything Down
You’re going to be getting a lot of information, seemingly all at once, in areas that you probably have very little familiarity with. Don’t be afraid to ask questions when you need clarification and be sure to take good notes. Having good records can help both with your peace of mind and be important down the line with any questions that your doctors may have in the future of what medications or other forms of treatment you received.
“Documentation plays a huge role. You need to keep track of everything that’s done. When and how much and how often, and keep track of all the medications that they’re giving you.”Juan Martinez, whose son, Jaxson, is now cancer-free
In whatever way spirituality or religion plays into your life, use it as a foundation for your health journey and something to turn to. Many people point to their faith being a guiding force for healing and a source of strength in their lives. They even say that without their faith, they would not have made it through their health crisis. When obstacles begin to mount, faith could help you get through this.
“Keep the faith, love with all you can, treat every day as though it’s your last. I know we should do that always, but to really enjoy every moment.”Brittany Hammond
It can be a natural instinct to use Google in an attempt to understand and research your diagnosis. As tempting as it can be, be wary of the Google rabbit-hole. Doing research is good, but a lot of what Google will show you might not be helpful for you. If you have specific questions about your diagnosis you should turn to a medical provider like your doctor, who has a better understanding of your unique and individual situation.
“Biggest thing which I got the advice from my doctor, don’t Google. She said, ‘Don’t do that. I know you want to, but there’s just a lot of information out there, and some of it can be good and some of it cannot be so helpful.”Jennifer Ndegwa, mom of two and breast cancer survivor
At an overwhelming time like this, it’s good to give yourself space to reflect and do some introspection. Meaningful positivity like writing in a gratitude journal or partaking in other mindfulness activities, such as meditation, can help you to channel positive energy toward your recovery. Take time for yourself and intentionally reflect on what you’re going through.
“Since my cancer started, I’ve been writing every single day, ‘Today, I’m grateful for,’ and I write whatever. It can be anything simple or big, but it helps you to keep perspective.”Jennifer Ndegwa
Start a CaringBridge Site
When you’re just starting your health journey, you have a lot on your plate. CaringBridge replaces the time-consuming task of sharing your health news over and over. It’s a free, easy to use online journal for sharing health information with your family and friends. Your support system is larger than you’d think, and they want to help you during your health journey.
“CaringBridge really helped us. Everyone had a central location where they could go and find updates about Kaden but once he turned a corner, it really helped me heal personally because I was the one doing the entries and so it was a good way for me to kind of let out some steam and to relieve some stress.”Stephanie Kruciak
“Here’s the thing about a diagnosis like mine: People want to give you some space, but all I wanted was a hug. It was on CaringBridge that I found the support that I’d been missing elsewhere online.”Caroline Wright, wife and mom of two living with glioblastoma