Living with invisible illnesses is something Dr. Julie Farris and Lori Myers know all too well. They shared their stories Friday at a luncheon at Fellowship Baptist Church, sponsored by Missouri Highlands Health Care.
In welcoming the group, Myers said, “The aim is to help increase awareness and education, to remove the stigma, and to establish a support group to help combat the isolation, loneliness, frustration, grief and hopelessness that can arise while trying to cope.”
Myers is a local advocate who has lived with a chronic invisible illness for 25 years.
Farris, a Poplar Bluff native, has lived most of her life with chronic illness. She was 8 years old when she was diagnosed with her first invisible illnesses.
“I actually have three invisible illnesses,” Farris said. “I have Crohn’s disease, I have inflammatory arthritis, and I have autoimmune thyroiditis, so I kind of got the trifecta of things. “
Crohn’s disease is the main issue Farris deals with in her life.
“Invisible illnesses or disabilities are non-visible diseases that are typically chronic illnesses and conditions that can significantly impair our normal daily function and our normal daily lives,” she said. “It can be a physical illness, it can be a mental illness. It can be a neurological condition that affects those who looked perfectly healthy.”
Sharing her story, Farris said, is “kind of the messy side of a feel-good story.”
“You don’t get recognition for the behind-the-scenes story of dealing with the chronic illness, surviving the physical pain, the mental and emotional turmoil...There is no asterisk at the bottom of a diploma or an achievement saying she did this while battling a chronic illness, and no one had a clue. So here we are today to talk about invisible illnesses.”
__Life with Crohn’s__
Her first episode with her disease occurring on her eighth birthday.
“My family came over to celebrate, had a great cake, blew out the candles. Mom and Dad are cleaning out the kitchen. My sister and I decided to go to bed. Mom says, ‘Do not eat any more of that birthday cake.’ So what did I do when they had all gone to bed? I ate that birthday cake.”
She recalls right after “having some severe stomach pains, some really bad cramping. I remember sitting in the bathroom while my dad held my hand. My mom rubbed my back. I can only imagine what they were feeling as parents.”
Her parents David and Mary Farris took her to a pediatrician, who believed she had inflammatory bowel disease and advised them to take her to St. Louis. She was admitted to the pediatric gastroenterology service at Cardinal Glenn Children’s Hospital. Farris talked about the humiliation, the missed days of school, her overall health suffering — she was removed from school for the entire fourth grade year.
The next year, the doctors and her parents made the decision to remove her colon.
“What I did not understand is that removing my colon meant I would have a temporary ileostomy bag at the age of 8 in order to bypass the remaining inflamed intestines until they could heal enough,” she said. “The icing on that cake for my family is that my mom was diagnosed with a brain tumor. She had three craniotomies at WashU while I was in Cardinal Glennon. Imagine that my dad is here, running two pharmacies. My sister is 4 years old.”
Her grandparents, the late Rose and Ken Michel, and extended family rallied around the Farrises. Today, Farris gives credit “to my parents, my family, for never giving up on me. They never treated me any different than my cousins or friends.”
But this had a downside. Farris felt pressured to re-enter life at full speed — she competed in sports, gymnastics and cheer. She became afraid to reach out for help or even admit how exhausted she was for fear of disappointing the people who loved her.
Wanting to do something productive with her life, she decided to go into medicine.
“I thought I could do anything that I set my mind to, including being a physician,” she said. “I had decided after all those hospital visits I was going to be a pediatrician. When you’re admitted to an inpatient pediatric floor for long enough you get to witness daily kind acts from the staff and doctors there.”
She loved college and medical school, but “they were they were really challenging times for me. Me being me, I still did it.”
Farris avoided parties and social activities due to diarrhea, which struck 16-18 times per day. She was malnourished and exhausted. Finally, she saw a gastroenterologist named Dr. Joshua Courson.
“He heard my story and said, Julie, this is no way to live. Your quality of life is terrible. You deserve better. You need an ostomy again, and this time it will save your physical and mental health. I felt like I had been given another chance at life. I was shocked,” said Farris.
After her fifth abdominal surgery, things improved for several years. She graduated medical school and finished her pediatric residency at Cardinal Glennon. She married and adopted a daughter. Then, a relapse: one Christmas her Crohn’s symptoms began anew. She wasn’t sure if it was a conscious choice, but she tried to ignore it. She was eventually rushed to Missouri Baptist Medical Center in St. Louis.
“I needed three to four units of blood. I guess I had been bleeding a lot more than I actually knew,” she said. “For 18 months, I tried every treatment thrown at me.”
Between her symptoms and general anxiety, Farris took a six-month leave of absence from work. A team at the University of Chicago at last located the bleeding, performed one more surgery, and started her on a new medication. She was and continues to be in remission, but there was still a cost.
“My bladder had been damaged during the surgery. These are the things you don’t hear about because people don’t talk about it. “
Today, she is doing well.
“I’ve now had my ostomy for 26 years. I do still fight the symptoms of Crohn’s or the side effects of the treatments of Crohn’s daily. I suspect others of you have similar stories with different diseases. But one thing tends to stay consistent: these invisible illnesses have changed us. They’ve changed our families. They’ve changed our mental and emotional health.”
__Getting help__
If one suffers from a variety of symptoms with no diagnosis, Farris suggested starting with a private care physician.
“Don’t worry if they blow you off. You just find another physician that’ll listen. If they can’t be empathetic, they’re not deserving of our time,” she said,
Obtaining a diagnosis is sometimes the most challenging part of the process. Delays in diagnosis are common, she said, because people with chronic and invisible illnesses often look healthy. Some of the doctors doubt there’s a real problem.
“Remember, getting a diagnosis is often a marathon, not a sprint. It often requires visits to primary care, specialty doctors as well as a variety of laboratory and other tests. When you get a diagnosis, ask your doctor: What is this disease? Please don’t ask Dr. Google. Dr. Google can lead you down the crazy train, and half of it is not accurate,” she advised.
Patients also need to advocate for themselves in medical settings.
“You are the one in the center of your healthcare team, and you should be involved in every single decision regarding your care. You should not tolerate being dismissed. If you are not getting the answers to the questions you see, it is time to go to someone who can provide those answers, and this has happened to me before.”
She recommended keeping a journal or a binder of all test results, letters, medications, supplements, and anything else needed at a doctor’s office.
Finally, be honest.
“You never know, that the one thing you may leave out in the conversation could prove useful. There are a lot of people that don’t want to be honest with their doctors. Speak up, you have to give all the information. Ask a trusted family member or friend to come to you with a doctor so they can listen to the conversation and they can discuss the visit with you.
“Hold your head up with pride,” she added. “Know that none of this is your fault. Seek psychological support so you can freely talk about your disease and the limitations you have with a non-biased healthcare provider. It may not make sense to those without chronic illness, but chronic illness has the greatest effect not on our physical function, on our psychological function.”
The psychological impact is worse for patients diagnosed in their youth, or who had children at home during the time of their diagnosis.