When a Doctor Dismissed My Symptoms as Results of My 'Poor Choices'


“You’re making poor choices for a 22-year-old.”

Those words have stuck with me for five years since I came in to see you, looking for an answer to my long list of ongoing symptoms, many terrifying and embarrassing to say out loud.

Instead of getting an answer, you limited your investigation to my diet and exercise routine, because at my age that had to be the only reason why I was experiencing debilitating, red-flag symptoms. I left the appointment having been told I had a lazy bowel, there was no point in doing a rectal exam or seeing a specialist at this stage and that I should work on my diet and take better care of myself. I wanted to feel better, so I got stuck into exercise and focused on what I was eating, but after a few months I knew it wasn’t making a difference and my symptoms started getting much worse.

I felt embarrassed to go to another GP for a long time after, until my boyfriend at the time convinced me that what was going on wasn’t normal, and really pushed me to see someone else and not leave the appointment until I had an answer and a plan.

I found a GP who finally did listen to me (and is still my GP now) and I was referred to a gastroenterologist to have a colonoscopy. I woke up from the colonoscopy and was told that my bowel was carpeted in hundreds of polyps. Many were at the pre-cancerous stage as a result of having a rare genetic disease, familial adenomatous polyposis (FAP). Had I not found out about this for another six months to a year later, some of these polyps would 100 percent have turned to cancer.

I feel extremely lucky to have caught this before the polyps became cancerous. I was able to have plenty of time to process my diagnosis before having major surgery (proctocolectomy) to remove my large bowel. A year after my surgery I am facing other health issues related to my FAP, including an abdominal desmoid tumor which is another rare disease that is difficult to treat.

Despite these obstacles, I have a team of doctors who take an interest in helping me, constantly look for the best treatment options, appreciate that I am dealing with big things at a young age, and listen to my point of view on my own health.

There is definitely an assumption that you are only at risk for bowel cancer and diseases related to the bowel when you are older, but this is an assumption that could have cost me my life. My symptoms needed to be listened to sooner. There are still red-flag symptoms that need to be treated serious regardless of your age.

I write more about my life with rare disease at Shrinking the Silence in the hope of helping others feeling isolated and rare!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via NanoStockk.

TOPICS
JOIN THE CONVERSATION

Related to Familial Adenomatous Polyposis

When My Doctor Didn’t Believe I Knew What Was Best For My Body

Last year my pediatric gastrointestinal (GI) doctor of over 20 years decided to push me out of the nest and transition me to an adult GI doctor. During my hospitalization last year, I faired well with the change in doctors, as my new doctor and I started the song and dance of a newly established patient-doctor [...]

When My Daughter Asked If She’d Have to Get Scars Like Mine

“Will we have to get scars, too?” asked my 4-year-old at the dinner table last night. Though my abdomen was completely covered, as it normally is, her thoughts turned to the very long, very ugly scar that runs down the core of my body while she chewed her dinner. “No, baby, you won’t have to [...]

How I Became a Top Model With 2 Ostomy Bags

At the age of 2.5 years old, I developed a rare form of vaginal cancer called rhabdomyosarcoma. Doctors thought I would not live to celebrate my third birthday. Since the age of 3 years old, I have had a permanent colostomy and urostomy, which aids my bladder and bowel functions and causes me to wear ostomy bags. [...]

5 ‘Supportive’ Things Not to Say to Someone With a Terminally Ill Relative

People mean well. When you have a relative with a terminal illness, you depend on family and friends to lean on and support you. Sometimes, those people say things that are ultimately unhelpful, primarily because they are at a loss and want to say something. What follows are five things that were said to me [...]