“In ten years, I have spent hundreds of days in the hospital, been diagnosed with a handful of chronic conditions, and had an entire realignment of my identity. Surgeries and life-saving interventions have turned my body into something I hardly recognize...but hope has always been an important aspect of my survival.”
- Erin Robertson, 25.
Hope. And- I also noted- a healthy dose of feistiness.
As Erin and her mom settled in to chat with me at Captain Buzzy's Beanery back in April, her blue eyes flickered with an intensity and depth of someone much older than 25. Probably because she's been through more in the last decade of her life than most people go through in their entire lives.
As we delved into the details, I scribbled down all of the medical terminology and the unfamiliar acronyms that had essentially become part of her everyday rhetoric beginning when she was only a sophomore in high school. Erin was healthy- an avid volleyball and tennis player- when she began passing out unexpectedly, often for long periods of time. With each episode, she and her parents became increasingly alarmed. One doctor initially explained it as low blood sugar. Another even suggested she was doing it for attention and recommended that she see a psychiatrist. Frustrated, her family continued to press for answers. Finally, nearly four months after the symptoms first began, they learned she had something called POTS Disease (Postural Orthostatic Tachycardia Syndrome). When a person has POTS, most of their blood stays in the lower half of their body, even after they stand up or change positions. This forces their heart to beat faster to get their blood to flow where it needs to. The result is huge drops in blood pressure, dizziness, and fainting.
POTS is fairly uncommon, so although there was a tiny bit of relief at having an explanation, there were now that many more questions and concerns. Erin and her family's search to find someone who specialized in her condition ultimately led them to Johns Hopkins. By this point, Erin was now a junior in high school and had also started to become violently sick each time she would eat. Her doctor at Hopkins felt that this new issue was somehow connected to the POTS. He sent her to the Mayo Clinic, and it was on her first day there that her bloodwork showed that she had something called Autoimmune Autonomic Neuropathy (essentially, the nerves that controlled her every day body functions had been severely damaged because her body was attacking itself).
Erin could have let this diagnosis have the final word. She could have used it as a crutch, an excuse, an out. But that's not who she is. I had known her for all of 45 minutes, and that much was already clear.
Her mom explained that when her school didn’t provide her with a homebound teacher, Erin essentially taught herself Algebra 2. She also had her mom, a cardiac nurse, give her fluids before her senior prom to help get her through the few hours there with her friends, and then she had a picc line and pole placed for the after party. For Erin, being benched by her own body just wasn't an option. In total, Erin spent between 100-150 days inpatient per year for those three years, and amazingly, she still graduated on time with her class that year.
Autoimmune diseases and Dysautonomia (the umbrella term used to encompass diseases like Erin's which affect the autonomic nervous system) are called “invisible illnesses” because in many cases, those living with the diseases can appear normal and healthy. But, often, the reality is a stark contrast. As we talked, she gestured to the sites of both her G and J tubes, which were placed into her stomach and small intestines to deliver food and nutrients when she couldn’t eat anything by mouth. She recalled in vivid detail the excruciating pain from contracting aseptic meningitis, as well as countless blood infections that nearly claimed her life on more than one occasion during her long hospital stays. It took her years to come off of the heavy narcotics she had been taking to manage her pain (at one point, it was 40 mg of dilaudid a day). But she did that, too. As of last September, she hasn't had any narcotics in her system since 2012.
And yet, that was the kind of pain she knew how to manage, the one she expected. Her voice shook as she began to speak of one of her dearest friends, Kristin, who passed away from complications of the same illness on Christmas Eve of last year. Kristin is actually one of six friends who have died as a result of autoimmune diseases much like hers, and the reality of it hits way too close to home. Erin's physical scars might not be obvious to most, but there’s nothing invisible about the grief, nor the survivor’s guilt that accompanies it- the lingering question of why she beat the odds when her friends didn't.
For her, there's a responsibility and urgency to bring meaning and purpose to the past decade of her life. It means making herself more visible in an effort to bring awareness to something that's still invisible to many. Dysautonomia is largely understudied and underfunded, and there’s still no solid ‘game plan,’ when it comes to treatment for these illnesses. That said, this is the first year that congress has ever given funding to the NIH to be used for research specifically for dysautonomia. There's some much needed momentum building and that much more reason to hope. And Erin embodies that momentum, herself, as she continues to gain back the strides that might have once slowed her down. This isn’t the life she or her parents ever imagined she’d have, but it’s one that she’s fought like hell to live. It's clear to anyone who knows her that she's not planning to waste a single day.