by Anjali Balakrishna
photography courtesy of Vanya Kohlweg
When you have a fever, coughing and vomiting, you have the flu; you go to the doctor, and they hand you a prescription for Tamiflu. When you break a bone, they apply a cast so the bones can mend. But, what do you do when you have symptoms that cannot be explained by simpler diagnoses?
For many patients with chronic illnesses, disabilities or even mental illness, this is how their stories began. They were in the dark, wondering what was going on with their bodies. They felt out of control and misunderstood.
Deanna Costa (COM ’18) began her journey before the age of nine, when she received a diagnosis of Irritable Bowel Syndrome (IBS). She was constantly running to the restroom, vomiting and worried about what was happening to her body, all at a fragile age. Needless to say, it impacts life in different ways when you are young.
“The diagnosis is just the beginning because it doesn’t really mean anything,” Costa said.
IBS is a fickle illness. You may have a name for what is wrong, but finding the right solutions is the majority of the battle. Prior to and post diagnosis, Costa had to undergo numerous tests: a barium test, endoscopies, allergy panels, etc. The tests alone are stressful, but with the intensity of the illness, it creates almost a domino effect in regards to mental health.
“If the stomach is off kilter in any sense, it can impact your brain,” and vice versa, Costa said.
For Costa, it seemed doctors did not truly know what was wrong. She was prescribed Ambien in the sixth grade and later Lunesta for her sleeping troubles. These had adverse effects on her stomach. At 15, they prescribed her laxatives for a problem she did not even have; it would make her already overactive system worse.
“I felt like I wasn’t getting the right care at all,” Costa said.
To add to her story, Costa only recently found out she has Scoliosis, a condition that causes a curve in the spine. She had suffered two back injuries and further aggravation with yoga. She was in pain, but no one properly checked the issue.
“How many times was I supposed to get a scoliosis check in school and never did?” Costa wondered.
Seeing as medical professionals were looking in the wrong places or were blind to the issue altogether, Costa took matters into her own hands. At 15 years old, she decided to cut meat out of her diet, since it can be harsh on a sensitive stomach. She stopped taking medications and looked at more natural approaches. She began exercising, seeing a physical therapist and a general therapist for her mental health.
Now, Costa has a much better handle on her overall health. She is her own advocate.
Going undiagnosed is frustrating, but so is having a label that does not truly get at the heart of the problem. This is true for student Marie*.
After having a severe GI virus, Marie began having horrendous headaches. Later, the condition worsened and she began to have migraines, complete with visual aura and vomiting; however, she did not think it would last.
“At the time it was happening, I didn’t think it would run such a chronic course,” Marie said.
When the pain persisted, doctors did a battery of tests and tried various medications, but with no success. Although Marie did receive some sort of diagnosis (chronic headaches with migraine components), she was frustrated and felt hopeless that the cause was unknown.
“I’d always seen doctors as idolized people that helped…everyone was at a loss,” Marie said.
Today, though the pain is better managed, Marie still feels like a medical enigma. She tried acupuncture, medications, other therapies and treatments, but nothing has helped completely. At this point there is no real plan, only to revisit old strategies and continue seeing doctors.
There are some people who avoid diagnoses altogether. This was the case for Allison Playdon (CAS ’20).
After her parents divorced when she was barely a teen, Playdon found herself needing to find some sense of self to cope with the stress. This turned into an eating disorder.
“I had to find success because I was not finding it in my home life,” Playdon said.
Her weight loss and struggle went unnoticed by her family. Friends attempted to help her overcome the illness, but to no avail. To further the process, Playdon turned to Cross Country as a means of purging. This, however, turned into a passion.
The struggle with Playdon’s eating disorder was exacerbated by the need she felt to fit the sadly traditional image of anorexia. As she said, “I wasn’t thin enough or sick enough.”
She felt shame for being outside the typical idea of what someone with an eating disorder is and this kept her from getting the help she needed. She also wanted to hold on to the sense of security and control she had made for herself.
Things eventually evened out a bit.
As she entered college, Playdon found herself slipping into old habits and patterns: over exercising, restricting her diet and other familiar symptoms. Her eating disorder began to impact her bones and ability to run. It was then that she finally realized she needed to seek help.
After years of struggling alone, Playdon finally had a diagnosis and she felt validation. She was relieved she could properly communicate her battle to her family. Her illness finally had a name.
Playdon says she is still in recovery but is in a better place than before.
Living undiagnosed is a lonely journey. You can feel what is wrong with your body, but no one can actually tell you the reason it is happening. Thankfully, there are an abundance of resources around, as well as continual research on different illnesses. Breakthroughs are always possible.
* Some names have been changed to maintain privacy