Rachel Gabbert Roberts (left, with husband Garrett Roberts) was 30 when she was diagnosed with idiopathic pulmonary arterial hypertension in 2010. Since then, she has learned to listen to her body and have a positive outlook on life. As a support group leader, Roberts, of Lemoore, California, shares her story to spread awareness and empower other PH patients.
‘I don’t let my disease define me — my courage and strength do.’
By Rachel Gabbert Roberts
For a few months before participating in a cancer fundraising walk, I was experiencing shortness of breath, heart palpitations and dizziness. At first, I thought I was just out of shape and needed to lose weight.
During the walk, I felt like I was going to die. I had no idea how I made it to the end of the race. The following Monday, my doctor sent me to get an electrocardiogram. Afterward, I had to go to the hospital in an ambulance. It was scary, and I had no idea what was going on.
Over the next few weeks, I underwent a variety of tests before I was diagnosed with PAH. My whole world flipped upside down. I was devastated to learn there was no cure and that I could not have kids.
Building community
The first four years after my diagnosis, I didn’t know anyone else with IPAH and was the first patient my specialist had treated with my condition. I felt utterly alone.
When I relocated to central California, I began to see a new pulmonologist, Vijay Balasubramanian, in Fresno, California. In the waiting room, I met other people with PH.
The next month, I attended a support group meeting and was blown away by how many people with PH were out there. I looked forward to those support group meetings. Finding others who understood what I was going through was huge. Now, I’m the leader for the Central Valley PH Support Group.
Silver lining
As patients, we are a powerful tool that others can learn from. I always say others should find the silver lining when dealing with this disease because there is always something to be thankful for. If you can’t find the silver lining, then find humor in the situation.
Laughter is often the best medicine, and even when things are not going the way I want with my disease, I can always find something funny about it. PH has already taken so much from us. Don’t let it take your joy, too.
Healthy attitude
I have learned to listen to my body and rest when needed. I have come to understand the importance of family and friends and to nurture relationships that help me grow. I have learned to say no or cancel at the last minute if my health isn’t cooperating, and that it’s OK to be patient with myself. I also have learned to take my medication at the same time every day. Not skipping doses is important to taking care of myself.
Most importantly, I have learned to be my own advocate. No one else is better informed about my health.
A healthy attitude toward life also goes a long way. I share my story and answer questions from family and friends. I want to make pulmonary hypertension something that everyone will recognize.
My life may not have turned out how I expected, but it’s still filled with blessings. When I was diagnosed, I thought I’d die alone. But God had other plans. I married my high school sweetheart after we reconnected through Facebook. We have a beautiful life with our sweet pups.
I have picked up hobbies over the years and enjoy reading, writing, jewelry making and painting. I recommend others find a hobby that brings them joy. Life is beautiful, so take time to smell the flowers or paint them. We get one go at life — give it your all and keep moving forward.
Photos courtesy of the author
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