[Guest Post] I’m a TSS survivor – this is my story

Written by: Shannon Toner

I got mTSS at 15 years old, it was the summer of ’08 and I just finished my freshman year of high school. I was on vacation visiting family in California and I started feeling sick the first morning after our flight. We arrived late afternoon, and I went to bed fairly early feeling exhausted and nauseous, assuming it was jet lag. I wore a Playtex sport tampon on the flight there, and changed it before going to bed that evening. The following morning I couldn’t get up, I was really fatigued and felt extremely dehydrated, but I couldn’t keep any liquids down, to the point of vomiting mid sip.

That afternoon I saw a doctor; they gave me a shot for the vomiting and I was sent right back home. A few hours later, I was vomiting non stop and couldn’t stand up or stay awake. I was brought back to the doctors a second time, my uncle carried me since I could no longer walk. My last memory is of being in the waiting room. I was with my mother, and I told her I couldn’t sit up anymore, I had to lay down and I was going to move to the floor. I was soon wheeled to a cubby-like bed with a curtain. I woke up days later in the middle of the night, disoriented, laying in a hospital bed. At the time I was pretty irritated that no one was around to answer my questions, but now I often think, “at least I woke up.”

I was lucky, there were many coincidental events that saved me. My dad was working and was taking a later flight out (until he got the news, of course). Since he wasn’t there, my uncle (father’s brother) was there for the appointments to be support for my mother. Which is why my mother confided in my uncle, that on top of all of this, I was already upset about being on my period during vacation. My uncle immediately said, “it’s TSS”. I have two older female cousins, and I’m not sure if my father would have thought of that as quickly, or at all. We were also on vacation, which meant all of our plans included everyone, so when I wasn’t feeling well all eyes were on me. At the hospital, Stephen Hosea was the head of infectious disease and a Harvard graduate who happened to write articles on mTSS. I don’t believe I would be writing this if one of these pieces to the story were missing, it just happened to line up.

My mother filled in the blanks and told me my blood pressure and heart rate were at opposite ends of the normal range, I was rushed to Cottage Children’s Hospital in Santa Barbara.  The doctors couldn’t determine a diagnosis with full certainty, but suggested meningitis which would require a spinal tap. Thankfully my family decided against that treatment, and my uncle suggested Toxic Shock Syndrome in time to save me.

I was supported on IV’s the entire ICU stay, and the doctor pointed to each bag telling my mother, “This is the army, the navy, and the marines. Each is working as hard as possible to fight this, but she has a 50/50 chance of making it out.” The next time I woke up, roughly 10 doctors in white lab coats surrounded my hospital bed, clip boards ready and staring at me. They asked questions like, “Did you see bugs crawling on the wall?” This definitely didn’t help my confusion, and it wasn’t the only time I felt more like an experiment, than an adolescent girl who had just survived a traumatic experience.

An unexpected trip to the ICU on vacation naturally left me and my family shaken up, but for me, that was just the beginning. I was severely unaware of the grueling recovery I was about to embark on. In fact, no one knew. Doctors’ recommendation were purely guesses, and 15 years later, I know their advice wouldn’t have helped.

The most immediate side effects that took place were physical. After I got out of the hospital I remember being in the car, running my hand through my hair, I felt something hard on my scalp, and when I kept moving my hand through, I was left holding a handful of it. My hair fell out for a few months, and what I felt on my head were scabs. My skin peeled entirely off my hands and feet. The fatigue and disorientation lasted a while as well. After we returned home from CA I saw various doctors.

The OBGYN advised to wear pads rather than tampons, at least for the first few months. I was given a mild prescription pain killer (Ponstel) to help with the cramps. It worked somewhat, but at 15 years old in the state I was in, I didn’t bother to make any of the follow up visits I was supposed to when the meds didn’t work. I stopped tampons for a little, but I was an athlete and played tennis, so I eventually went back to tampons. Once I was a bit older and did my own research, I stopped taking the pills and wearing tampons altogether, it’s been 5 and 2 years respectively. Today I’ve taken a different approach to my menstrual health and finally feel more in tune with my own body.

The mental side effects were the most difficult to cope with and manage. Doctors performed an EEG test on me and informed my parents that I would suffer from various disorders, but they would be short lived, 9 months maximum. Their solution was to temporarily prescribe a laundry list of pills addressing my ADHD, memory loss, anxiety, depression, and PTSD. My parents were hesitant due to the addictive nature of all these drugs, in addition to my weakened immune system, and decided against medicating me. Now that I’m older, I’m so grateful for my parents’ decisions, but going through it was a different story.

I was an extremely shy girl growing up. My freshman year of high school I was in all honors, had a starting position on the varsity tennis team, involved in numerous clubs, the church, and peer leaders. I also didn’t go out to parties, I anticipated I wouldn’t drink until legally able. Post mTSS, my sophomore year doesn’t look much different than my freshman year, at least on paper. But mentally and behaviorally, I took a 180, and it was the darkest time in my life. If I could erase it from my memory, I would. I didn’t tell my friends or anyone what happened to me because I was told no one experiences what I experienced anymore and I felt it was my own fault. I was told it’s a condition that was left in the ‘70s and is super rare. I was embarrassed, ashamed and utterly alone. I went through odd physical changes and unexplainable mental issues, and in order to cope I turned to partying. I was really lost. When the feelings were too much, I’d drink myself numb, and when I was starving for affection, I’d fill the void in all the wrong places. Then I’d go home and punish myself for not knowing how to get off this merry-go-round, or how I got on it in the first place.

My mother tried to find support, for me and her. She didn’t know why I was acting like a completely different child and I was too angry at the world and myself to communicate what was going on. There was little to no information out there. My grades suffered, as did friendships and my own mental health. It was years before I told anyone the truth and over a decade before I actually felt confident enough to speak out about my experience. Today, I’m in a much better place. I surprise myself everyday with what I accomplish, but I still often wonder where my life would’ve taken me if I didn’t have mTSS.

My hope for bringing awareness to this disease, aside from the obvious one of saving lives, would be that it offers a safe space for anyone suffering side effects, to know that what they’re feeling isn’t their fault. And to the rest of the public, so they know how to be a support system.