Suddenly becoming sick leads to a rapid maturation in young individuals that only those who have been through significant life-changing events can understand. When one experiences an unprecedented and life changing event early in life, they are forced to face some of the hardest things in life, even if they aren’t ready for it. Things that people usually don’t face until late adulthood or don’t ever have to face. One day, you are living your life as a normal young adult. Going to classes, partying, attending events, exercising and participating in various other activities. You are meeting new people and, most importantly, figuring out what you want in life. Making goals for a career, pursuing relationships, trying out new things, and exploring your newly found independence. What seems like the next day, however, your life is abruptly paused. Chronic illness pulls you out of where you are thriving and makes you dependent on loved ones who are busy with their own lives. No one plans for their adult children or their significant other to suddenly become vulnerable and somewhat helpless as a young adult. To watch someone who was once very capable on their own very quickly lose many of their abilities is scary and worrying from a loved one’s point of view. For me, and I know for many, the abrupt change in living environment that may come with becoming suddenly ill can be very stressful for a multitude of reasons. It’s stressful for the people you live with, which for many is typically family, to suddenly accommodate your prolonged presence. For me, it was stressful to be back in my home, where I experienced some trauma in the past and, unfortunately, continued to experience many anxiety-inducing events as a result of my autistic brothers’ violent outbursts. This did a number on my parents as well and they were in the midst of separating. As you can imagine, these were very difficult conditions to be in when going through a time already full of uncertainty, worry, and sadness. My parents’ focus, by necessity, had to be shifted elsewhere, especially with issues regarding my brother, but physically and, most of all, emotionally, I was in dire need of constant support. I was in constant fear that it would all be too much to handle for them and someone would suffer. I don’t ever want to be in a position again where I have an inextricable reliance on others. It feels very unfair to put someone in that position, and yet you need it.
When becoming suddenly sick, it almost feels as if you are in someone else’s body. Such a rapid change feels foreign, especially when you can’t see or specifically identify your sickness. I felt betrayed that my body suddenly couldn’t correctly conduct its normal functions. Something that it had been doing with no issue for 19 years of my life. Once I realized that parts of my nervous system had been progressively experiencing dysfunction before I even had my first episode and that some of the triggers included the mold I was exposed to at school, the very place that I found lots of happiness my freshman year, I also felt betrayed. It felt so unfair. Despite experimenting with some things in college, I led a pretty healthy lifestyle and dealt with the many sinus infections I had in the way I thought was best. Unaware that they were mostly due to mold and would not go away despite the antibiotics and steroids I took. I took many decongestants (particularly Sudafed), which were NOT great for my POTS in the long run, especially those few weeks leading up to me becoming bedbound. Finding out that all of this, along with the edible situation (I explained this in an earlier post), has made me feel guilty and makes me sometimes wonder what could have been had I been aware of what was sort of silently happening in my body. If I could go back and stop the mold exposure, that alone may have changed everything. It was the one constant thing that made the edible situation so triggering in the end. Had I not taken the edibles, I still would have eventually developed POTS, but I think it would have been somewhat less severe and more progressive. Maybe I would have never been bedbound. At the same time, though, the steroids and decongestants may have been just as overstimulating and harmful to my nervous system as the edibles. I’ve thought through everything leading up to my sudden battle with POTS hundreds of times over. I so badly wish I could pinpoint exactly what I did to worsen what was inevitably going to happen to me, and although I know this kind of thinking is not very healthy, I do wish I could find out what my life would have been like had it not been so severe, or even if my POTS was never fully triggered (as I’ve mentioned before, I’ve certainly had dysautonomia underlying since I was young, but it hardly affected my life in a critical way). Before I found out I had mold poisoning and made the connection between it and POTS, and in the beginning, when I was much less knowledgeable about dysautonomia, I really thought I ruined my life by taking some edibles. I was so upset because the night that I took those, I finally let loose and honestly had a great time prior to taking them. I didn’t drink or smoke/take any sort of substances prior to college, and then in college, I drank on the weekends (about what I would say is the “normal” college student amount) and smoked only a select few times just to relax. Before I knew how many other factors contributed to what had happened to me, I couldn’t believe that one little instance could lead to such consequences, especially when there were tons of people in college abusing substances without consideration, who were essentially completely fine. Once I began really thinking about all of it logically, however, I realized that despite not having any idea about what was wrong with me, it was very unlikely for some edibles to have caused me to become bedbound with extreme episodes of adrenaline, tachycardia, and chest pains that had been persistent for weeks after the incident. There was also that odd two-week period following the edible incident where I had yet to experience another episode since that night. Thus, it became increasingly clear that the edibles were not directly correlated with what was happening to me. It was something greater, and so I attributed that to a simple trigger, which I later learned to be among other triggers. Coming to this realization was both a good and bad thing for my mental state. It was nice to know that I didn’t ruin my body with one stupid incident, but at the same time, I was terrified about what was actually going on with me.
The first few weeks following what was technically my first POTS episode (uninfluenced by alcohol or edibles), I saw a few Cardiologists (as I’ve mentioned before), and I essentially came to the conclusion that I probably had POTS, and my doctors had to agree because they couldn’t figure out anything else. At this point, and for the next successive months, when things kept getting increasingly worse, I was having a hard time believing that what I had was just a chronic condition. I know now just how bad chronic conditions can be, but at the time, I did not realize that something that wasn’t technically dangerous and potentially life-threatening could be so severe and debilitating. At this point in time, I was constantly in fear that I was dying. Despite what I read online about POTS, nothing seemed to grasp just how bad it could be, so I figured there was something doctors were missing. You can imagine each time I had a severe episode where I was close to being unconscious or had raging adrenaline, that there was a looming thought in the back of my mind that I wasn’t going to make it. Adrenaline rushes are not panic attacks. Some things may feel similar, but they are also very different from my experience. Even now, with everything I know about my body and my illness, if I have a full-blown adrenaline rush, it is very hard to convince myself that I am not having a significant medical emergency. The impending doom and the electrical rush I get through my body are indescribable. My nervous system was quite literally telling me that I should fear for my life, and since it was all so new to me, I had no reason to think otherwise. I became very afraid to be alone, especially at night when I knew I would awake with an adrenaline rush. There were times when I was scared I would die in my sleep. Nights were the absolute worst. I couldn’t sleep because I would rest or even sleep so much during the day. At night, my mind would race, trying to figure out what was wrong with me and come up with solutions. There had to be something I hadn’t tried yet. Something else to test for, a different medication, a different doctor, anything else. I was so incredibly impatient. I couldn’t sit back and just let this happen to me. It was literally nauseating not being able to do virtually anything about what was happening to me. During the night was when I seemed to experience my worst cardiac symptoms and my irrational, but at the time, seemingly rational, fear that I was in heart failure and would have a heart attack would creep up on me each time I had a new or worsening symptom, which was pretty often. There were times when none of it felt real, and I was worried I would lose my mind. Then there was the time I went to see a cardiologist for the sole reason that I was told his nurse practitioner was familiar with POTS patients and had treated patients with it, only to realize she didn’t know anything…although the cardiologist thought the fact that my heart rate spiked so significantly even without postural changes during the adrenaline rushes, meant that I maybe did not have POTS and instead had a deadly adrenaline tumor. A pheochromocytoma. A rare but potentially deadly tumor that could lead to heart attack/stroke and or could be cancerous. This was not something I needed to be planted in my mind at the time because, yes, I had begun to experience health anxiety even over small sensations or symptoms I would have because I felt I needed to be on the lookout for warning signs, and there were so many sensations happening to me all of the time. Seriously, if I wasn’t experiencing one symptom, I was experiencing another, and there wasn’t a minute that went by where I wasn’t dealing with discomfort. Anyway, the doctor instructed me to do a grueling 24-hour urine sample test to see if I had this horrible tumor, and I had to wait a week to hear my results. A week I spent where my worst fears were reaffirmed. Of course, I dealt with some bad episodes that week, and the whole time, I wondered if I was going to die. I wanted to go to the ER badly, but the possibility that I would sit there feeling awful for hours just to be told everything was fine and the fact that I couldn’t really move during some of these episodes outweighed my fear.
I can’t fully explain just how sad and hopeless I was for so long after becoming sick. The constant changes in medications certainly didn’t help. There were times of acute sadness and constant crying, and then there were times of numbness and dissociation. I wanted to escape my cyclic and grueling reality where my days all felt the same and time moved either too fast or too slow. When I looked at myself in the mirror, I couldn’t believe what was happening to me because, other than some changes, I looked the same but didn’t feel like myself at all. Especially when I was profoundly angry, I felt significantly targeted by the world and felt that no one understood what was happening to me (most people around me couldn’t understand no matter how much detail I would give) even though there were people online who did. My reality was so different than everyone else, and trying to live in a society not designed for chronic illness is extremely tiring and isolating.
There are things that you must face when becoming sick at a young age that you just don’t feel ready to tackle because you should not have to be facing these things, and yet you are. Having to advocate for yourself given the structure of our healthcare system, realizing that you might be in danger or maybe forever held back by physical issues, or you won’t be able to thrive and meet your goals. Having to choose between your health, school, social life, and opportunities that you were looking forward to. You have to accept the fact that, ultimately, only you can truly help yourself and that others will be helpless towards you at times, and you have to calm yourself and maintain your sanity during the hardest times. Chronic illness is a constant battle between having to be on top of advocating, researching, looking for solutions, and maintaining a grueling healthy lifestyle while just wanting to be young, blissfully ignorant, adventurous, to have fun, and to socialize with people without anything holding you back. When I became sick, I suddenly became isolated and selfishly focused only on myself when I wanted nothing more but to not have to think about my body and just live and not only survive. All the while with the gnawing fear that my old life would move on without me, including my friends.
Keeping my mental health in check was really the only and most important thing I could do during the times when I was between doctors and trying new medications. Of course, there were times when I would “give up,” but that would only last a short period of time because what else could I do other than keep fighting? I always knew I had to keep going (mentally, that is). No matter how difficult, I had to keep some sort of goal in mind, as well as at least a tinge of hope. I needed to distract myself as much as I could from what was happening to me. I needed to reaffirm to myself who I am so I wouldn’t lose sight of the things I loved and my desires and aspirations by letting myself become consumed by my sickness. It’s a big part of who I was and still is, but it does not define me.
*Positive/helpful note: Having a pet to act as an emotional support animal can be really helpful for chronic illness. If you think it would be helpful, a service animal can do wonders as well. For me and my POTS, I did not necessarily need a service animal to physically do things for me, but my two dogs were very necessary to help me through everything. They could be with me whenever I wanted and would physically ease my pain. My dogs are very interactive and attention-seeking, so they were a great distraction and a good fill for the times I felt lonely. They gave me more reasons to keep fighting towards the eventual goal of getting better so I could play with them more and be happy around them. I know they sensed my sadness and worried about me.
