March 01, 2022

How I Stopped Hiding in the Shadows of Rare Disease (by Jenny Jones)

By ImagineWe Publishers
How I Stopped Hiding in the Shadows of Rare Disease (by Jenny Jones)

I hear others within the chronic illness or disability community urging others not to let one’s illness or disability define themselves. When I was younger, I followed this sentiment but as the years have gone by, I no longer relate to this sentiment. Nor do I want to.

I inherited a genetic mutation from my mother for the rare disease Familial Adenomatous Polyposis (FAP). FAP causes 100s to 1000s of precancerous polyps to develop in the colon and they will eventually become cancerous. Colon removal is the standard treatment resulting in either an ostomy or a reconnection such as a J-pouch. FAP has elevated risks for cancers anywhere in the GI tract and for other cancers throughout the body. There are extra colon manifestations including Desmoid tumors, bony growths, dental abnormalities, and more.

Living without a colon has its own side effects of diarrhea, dehydration, and malabsorption which in turn can create additional health issues. I was diagnosed with FAP at age 8 and required my colon removal at age 9 as my polyps were already starting to turn cancerous. Due to surgical complications, I required 5 surgeries that year and lived with an ileostomy for 6 years.

As a result of additional surgery, I developed another rare disease – Short Bowel Syndrome (SBS). SBS causes dehydration and malabsorption due to the intestine’s inability to properly absorb nutrients that is further worsened by excessive diarrhea. Artificial hydration and nutrition may be required temporarily or permanently depending on the severity of SBS.

I never adjusted to having an ostomy. I was insecure, embarrassed, and frankly, I hated myself. I was terrified of others discovering I had an ostomy, particularly my peers. I didn’t think anyone without an ostomy would understand and I feared being bullied. In high school, I was able to have my ostomy reversed but continued to have health complications requiring an additional surgery the following year.

After my ostomy reversal, my fears didn’t improve, and I became terrified of my peers learning about my health issues. In an effort to keep others from learning too much about my health, I was steadfast in living a life that wasn’t defined by my illness or rare disease. I lived like this, in the shadows of my rare diseases for 2 decades after my diagnosis. It was emotionally exhausting remaining guarded non-stop, never free to just be me. I was constantly worried about how others would react if they discovered my health secrets.

In 2012, I started to join a few online groups for those with FAP – this would ultimately change my world. The administrator of one of these groups asked me if I would start a blog about FAP to help spread awareness. I was hesitant but agreed and Life’s a Polyp was born. However, I still didn’t have self-confidence or enough self-love to run Life’s a Polyp openly, so I remained anonymous.

With a lot of effort, a lady from Michael’s Mission discovered my identity and reached out to me about Life’s a Polyp. Through her support and encouragement, I took the leap and openly identified myself to the world. Little by little, my confidence and self-love grew. My reach began to grow, and I started hearing stories from others with FAP and similar experiences and in doing so, I learned how telling my story was impacting others.

To this day, I am blown away by the positive and supportive comments I receive from others who have found Life’s a Polyp to be helpful. I never expected my blog would have such an effect on anyone else. I have come to realize that I do define myself by my illness. I chose a medical career focused on helping others learn to cope with their own illnesses that I wouldn’t have chosen if it wasn’t for how my own health experiences as a child shaped me.

My personal time is focused on the FAP and SBS communities – whether that’s individually or through Life’s a Polyp to help educate, raise awareness, or simply provide support to someone hurting. Over the years, I have expanded Life’s a Polyp from not only a blog but to also include a YouTube channel, social media (Facebook, Instagram, TikTok) and a shop featuring several designs highlighting FAP, rare disease, and chronic illness. With my shop’s first design, I started a FAP research fund through the National Organization for Rare Disorders to which all profits are donated from Life’s a Polyp Shop.

My latest endeavor is my children’s book about FAP to help children learn about the disease whether they themselves or a loved one has been diagnosed. With the outpouring support of others, I no longer feel that I must hide in the shadows of my rare diseases. I unashamedly declare my health experiences and struggles to the world all in the hope of helping another person thrive with their own health struggles. By doing so, I have been afforded the most fulfilling gifts in return: freedom to be myself and the joy of helping others.