Health Literacy Will Help Us All

My Story

My name is Dee Burlile. I am married, have three kids, and live in the state of Idaho. I was diagnosed with scleroderma in 2016 after several years of treatment and medical procedures for unexplained conditions that were beyond the scope and practice of my medical providers. I come from a state where natural resources are emphasized over medical resources, so I have often felt alone or disenfranchised from the community in which I call home.

After learning about my illness, I found others in my area with similar experiences, so I became involved in advocacy. I have developed a deep level of respect and understanding for those with chronic illnesses and through my advocacy work I take every opportunity to explain to people that when it comes to access to quality healthcare, “It’s not political, it’s personal.” The following is my journey with scleroderma and with the medical industrial complex.

I started having health issues about 15 years ago. We had just moved into a beautiful home in a close-knit community in southern Idaho. It was the perfect setting for the life in which I had always dreamed. Soon after settling in, I started having ongoing bouts of migraines, nausea, vomiting, shortness of breath, body aches, leg pain, and extreme fatigue. At first, I thought I had a bad case of the flu, so I didn’t worry too much. After several months of feeling sick I sought out medical care. For the next few years, I was bounced from doctor to doctor and kept getting the same answers, “this is beyond the scope of my practice,” “it could be postpartum issues,” or my personal favorite, “let’s not go looking for a zebra when there isn’t a zoo in town,” when I asked about the possibility of an autoimmune condition. These answers were not only counterproductive, but they were also demoralizing. I continued to do what my mom had always told me to do, I grew thick skin (which will come up again in my story) and tolerated what felt like my concerns were being dismissed by the medical establishment. My medical care was being relegated to step therapy, or treating the symptoms with the cheapest medications possible, rather than going after the root cause of the problems. In addition to the treatment, or lack thereof, that I was getting from medical providers, I encountered a mounting level of red tape, denials, delays, and lack of response from our insurance company.

As time progressed, I contracted meningitis, was diagnosed with thoracic outlet syndrome (requiring rib removals), had my gallbladder and appendix removed, and had a hysterectomy as well. I was then diagnosed with a transient ischemic attack (TIA), had blood clots and a pneumothorax, and ultimately had to terminate my pregnancy in the 7th month of my pregnancy with my son. I was so thankful that my son was born without any serious complications. However, my health continued to get worse. I urged my provider to look further into my complaints and was told that I was “just having post-partum issues, and it was common for any mother with three young children to feel more pain and fatigue than usual.” After months of agonizing pain and no relief of my symptoms, I was referred to another physician for further work-up. Within days of completing bloodwork and imaging, I was diagnosed with ankylosing spondylitis, an autoimmune inflammatory disease that, over time, can cause some of the bones in the spine (vertebrae) to fuse. The next several years I endured multiple surgeries for neck and lumbar decompression of my spine and to remove calcification from adjacent muscles of my spine that the surgeon believed to be breaking off from herniated discs and spinal fractures. (I would later discover that the ‘calcification’ and ‘friction rubs” were related to a separate autoimmune disease altogether.)

Just as I began to piece together and adapt to having an AS, I began to lose weight rapidly. I continued to have difficulty breathing, frequent seizures, severe Raynaud’s attacks in my hands and feet and severe gastrointestinal issues, all requiring multiple trips to the ER. After several years without adequate healthcare and with no explanation for all my health issues, I traveled to National Jewish health in Colorado, Northwestern Medical Center in Chicago, and the Mayo Clinic in Rochester, Minnesota, where I was diagnosed in 2016 with another autoimmune disease called scleroderma (systemic sclerosis). Since being diagnosed, I have had to endure many procedures for esophageal dilations for swallowing issues, cardiac catheterizations, lung biopsies, oxygen devices to help me breath, a diverting loop ileostomy requiring ostomy bags, and ultimately, have had to have my entire colon removed.

Scleroderma is an autoimmune condition that causes fibrosing of the skin and internal organs. It is a terminal illness of which there is currently no cure. The word scleroderma literally means, thick skin…As I said before, I grew thick skin.

Being diagnosed with scleroderma has been a bitter-sweet occurrence. Bitter because my complaints were dismissed or minimized over the years, and sweet because I finally had validation for all the years of crying out for help. I still take over 37 medications per day, have infusions through a port in my chest, and have to travel out of state to Washington and Utah for healthcare, but I am better equipped to help other people with chronic illnesses.

After being diagnosed with scleroderma my challenges didn’t end, but I became an advocate with the Scleroderma Foundation. I studied the illness, attended national conferences, developed the Southern Idaho Scleroderma Support Group, and engaged in education and outreach activities. My goal was and continues to be to increase awareness and to improve services for people with scleroderma, ankylosing spondylitis, and other chronic illnesses, especially in rural states where knowledge and services are lacking. Since becoming involved with the Scleroderma Foundation and the Idaho Arthritis Walk, I have participated in clinical research, presented at conferences, facilitated legislative advocacy training, assumed leadership roles, testified on Capitol Hill, drafted proclamations, developed corporate awareness campaigns and partnerships, and have received national awards for education and outreach. I not only developed the Southern Idaho Scleroderma Support Group, but I also led the consolidation and development of the Northwest Chapter of the Scleroderma Foundation, where I eventually became the Chair. I have volunteered my time and have supported other chronic illness advocacy groups to include Arthritis Foundation, Idaho Arthritis Walk, Sjogren’s Foundation, Pulmonary Fibrosis Foundation, Spondylitis Association of America, and Trevor’s Trek Foundation.

As I continue to work on behalf of people with scleroderma, ankylosing spondylitis and other chronic illnesses, I challenge people to change their thought process when it comes to heath care. People desperately need help and healthcare providers and the public at large need to be better educated about the issues facing people with chronic illnesses…For those of us with chronic illnesses, it’s not political, it’s personal.