Underneath the Undertow
I spent Wednesday evening crying. This might not seem surprising, that a person with bipolar disorder cried, but I don't cry much anymore with my current meds. I cried because, like many times in my life, I felt hopeless and invalidated. I felt as though I wasn't being taken seriously, and I thought maybe I had spent the last 10 months over-exaggerating and feeling sorry for myself.
Wednesday I went to the doctor and he told me, after I handed him a spreadsheet outlining how I've been feeling for the past few months, that I was "fixable" and that it's possible I was anxious about coming to the doctor, and that's why I wasn't feeling well (since the last few days had been the worst of it).
I mentioned dysautonomia to him, which is what I believe I might have, and I don't know if he even knew what that was.
The past few months I have been going back and forth between feeling hot, feverish, excessively sweaty, nauseated, dizzy, and weak; I'm unable to catch my breath, and I wake up with headaches often. I looked into all of these symptoms and spoke with people online about their issues to find out if anyone experienced anything similar, and I found someone who mentioned dysautonomia to me. After looking it up, I recognized that I had most of the symptoms. I talked to a few people with the disorder who agreed that my symptoms were consistent with that diagnosis.
I went to the doctor to tell him this and he dismissed it as anxiety or effects from my blood sugar being slightly elevated. When I asked him what to do about it he offered no solution other than getting another blood test to find the reason for the elevated blood sugar and treating that. I left his office, got in the car, and cried because I thought maybe I was being too dramatic or it was all in my head. I thought there was no way to fix this problem; I just had to be more stern with myself and get up even when I'm not feeling well, and go about my normal day.
Then the next night came around and I lay in my bed, curled up in a ball, with a trash can next to me because I thought I might throw up.
There is a possibility that this is anxiety, and now I'm terrified to take the test to find out if I have dysautonomia, because I'm worried it will come back negative and the whole thing will have just been me being dramatic and there would be nothing I could do to fix it. I don't want to find out that this is just a symptom of my bipolar disorder and my narcolepsy. My neurologist often tells me the reason I don't feel well most of the time is because of my bipolar disorder, but I don't fully understand how that works when my mental health is pretty good besides the occasional bout of depression. My emotions do not swing on a regular basis, and yet my physical body is in pain on a regular basis.
My plan is to mention these symptoms when I go to any one of my other doctors and see if they have any insight or if they even know what dysautonomia is. I know my neurologist will know, but he has a history of dismissing my symptoms as a part of my bipolar disorder. I don't know what else to do but to keep track of my symptoms and show them to my doctors. Maybe things will get worse and they'll have to take it seriously, but I shouldn't have to wish to get more sick just to be listened to. I know I have many diagnoses, and I think some of my doctors think some of them aren't real or they're mild, and so they think I'm just looking for things to be wrong with me. The truth is, if you have one autoimmune illness (which I do, narcolepsy) it's very likely that you'll have others too.
I spent years trying to convince people I was sick. First, before I was diagnosed with bipolar disorder, I went to my college counselor, told her what I was feeling, and cried hysterically until long after our appointment ended, because she told me it was normal for freshmen to feel that way. I told her I had good grades and made the Dean's list, because she told me a lot of freshmen have trouble adapting and do poorly in class so they get a little depressed. She suggested I make an appointment to come back and talk. I sat on that couch and cried my eyes out. I was dripping snot and tears, I could hardly breathe, and I was unable to calm down.
This counselor told me our session was over, brought me downstairs to the lobby (while I was still hysterical), and told me to make another appointment. I cannot stress this enough: I was very obviously NOT okay, I was embarrassed to be in the lobby with other students and faculty staring at me as I shook and retched from the extreme sobbing. I drove home in tears (not advisable, by the way) and arrived home only to collapse onto the staircase and cry until there were no bodily fluids left to be leaked out of my eyes and nose. I called my mom and she told me to calm down and that the counselor was wrong. She told me she understood how I was feeling wasn't normal and that she would take me to someone who would help me.
I still don't understand how someone could watch me break down like that and not think something was seriously wrong. How could a mental health semi-professional (they weren't psychologists or therapists) think it's okay to send someone who is that upset home? I felt defeated, like I was never going to find an answer to what was wrong with me or how to fix it. I thought the rest of my life was going to be spent with me lying on the couch, crying, having panic attacks, and occasionally embarrassing myself in front of my peers when I was hypomanic.
After I began taking medication I had many side effects including tiredness. I fell asleep in class, I slept in my car in between classes and then wound up missing my next class because I slept through it, I slept every second I didn't absolutely have to be awake. My piano teacher (I studied musical theatre) didn't believe me and wouldn't accommodate me. He told me I had to make it to my final on time (which was in the morning) or he would fail me since I was late to and missed a lot of classes.
On the way to the final I fell asleep driving and got into an accident. I was fine, nobody was hurt, but I literally had to ask the police officer for a note saying I got into an accident so that my professor would believe me when I arrived only 20 minutes late for my final. Of course he felt very bad and I'm sure he would have passed me even if I didn't do well, but that's not the point. There's a vibe you get from students who are hardworking and struggling as opposed to those who are making excuses and trying to get out of work. I was very hardworking, and up until I started my medication was always on time, always prepared, and always attentive in class. There were only four of us in the class. It shouldn't have been difficult for him to see that I was dedicated and tried my best. But instead of believing me and supporting me and making accommodations for me (which I understand can be difficult when there's no documented proof of your problems or if you didn't apply for accommodations with the school, so I'm not completely blaming him), he prejudged me and assumed I was using him to get out of work.
Teachers and professors: sometimes a student is suffering and they don't have a diagnosis or they haven't applied for accommodations because they are too sick to even do so or don't know they can. Take the time to talk to your students after class if possible and ask them what's going on if something seems off. I went from being a star student to being absent regularly and sleeping through classes. If you think something is up with your student, even if you think it's just them being lazy or trying to use you, talk to them and ask them what's up. Most of the time, the student won't come to you because they're too busy trying to survive, they might be embarrassed to admit it to you without you first offering support, and they could think they're fooling everyone until they get their grades and realize that they've failed. If a student is failing, sometimes that's because they're not doing the work or because they're not studying or participating in class, but a lot of times (especially in college and especially as a freshman in college) they are struggling with something that they're afraid to admit. Letting them know you're there for them and offering them a supportive ear could give them the courage to talk about their problems and eventually, with your support, seek help.
I did have one teacher who was very kind and supportive. He taught one of my gen-ed courses, political science, which I thought I would hate. It was one of my favorite classes. The teacher just talked about the history of politics and I loved hearing what he had to say. Unfortunately, the tests were based more on the readings from the textbook than what he said in class, and I had trouble reading because I would just fall asleep, but I talked to him about the problems I was having (after learning my lesson with my piano teacher) and told him I was having trouble staying awake or I might need to leave the classroom if depression came over me, and he was so supportive and kind about the whole thing. I did terribly on his tests, but he usually gave me a C because he knew I was trying and paying attention. I probably should have failed most of those tests, but the lowest grade I ever got was a D. He was my favorite professor. I don't remember his name, but I will always remember how kind and accommodating he was to me.
After a few years on all of these different medications, the tiredness still seemed to be an issue. It wasn't as bad as it had been, but it was still interfering with my daily life. I spent the entire night awake and then had to sleep most of the day, and I couldn't break the cycle. I went to my therapist and told her about the problem and she informed me that it was due to poor sleep hygiene and they were starting a group to help people who had trouble staying awake during the day.
I attended this group for six weeks. Here's what we did: set a clock for a certain time in the morning and get up no matter what, keep yourself awake throughout the entire day no matter what, and then go to bed at the same time each night making sure not to use screens at least 2 hours before bed, not use our bed for anything other than sleeping, and making sure the room was dark and cool before we went to bed.
There. I just gave you six weeks of sleep CBT for free. You're welcome.
Obviously, this did not work for me. I literally couldn't fall asleep when I wanted to, even if I woke up early and stayed awake the whole day. I wound up waking up at 11 am every day and not falling asleep until 5 am every night. According to my CBT group, 7 hours is the exact amount of sleep you should get in the night, so I suppose I wasn't very far off, but that didn't stop me from starting to dose off constantly throughout the day. (Also, with narcolepsy, it's not about how long you sleep, it's about your quality of sleep.)
I graduated the program. I was not better. It had not helped. I was still up all night and unable to stay awake during the day. I was miserable. I thought I was hypomanic at night and that's why I couldn't sleep, but I couldn't be hypomanic every night of my life and then not hypomanic the next day.
Finally, I looked into what it might be and found that it could possibly be narcolepsy. On my own, by myself, with no help from any other medical professional, I made a call to a sleep doctor near me and made an appointment. I told her I thought it was narcolepsy. She is one of the only doctors that has ever taken me seriously from the beginning and agreed to follow up on my problems. She set up a sleep test. First, you take a test to see if you have sleep apnea. If you have sleep apnea, you wait a few months after you've used the CPAP machine regularly to see if you still had the same problem even with the. machine. I did. So she sent me for the MSLT which is a sleep study which involves taking naps during the day. I was afraid I ruined my results because I napped when I wasn't supposed to, for hours in between the naps they scheduled, but I couldn't help it. Luckily, even with the naps I took in the comfy recliner they had (which I don't think should be there - there should be a treadmill or something to help keep you awake), my results still said I had narcolepsy. My doctor put me on medication, followed up with me, increased it when it wasn't working, and I have been able to sleep more hours in the night and less during the day since then.
I had a small seizure in my ballet class during my second year of college. I literally screamed "Oh my God!" and fell to the floor, convulsing. My teacher asked if I was okay and let me sit in the back of the room and watch the rest of the class. She told me if I thought I hit my head then I should go to the health center. After class, I called my mom and told her what happened and that I thought it may have been a seizure. She called my doctor and he came to the conclusion that if no one really reacted to it, it must have just been a little twitchy fit, caused by the meds I was on. Because of this, I stayed on a medication that eventually caused me to have a tonic clonic seizure in which I stopped breathing. Because my teacher was dismissive of what turned out to be a seizure, I continued doing something that would cause me to have a life-threatening seizure. Thinking about it now, I don't know how she didn't recognize it as a seizure. But she thought I was just a little twitchy (because I was having trouble with ballet since starting my medication and I told her that it was causing me to twitch and shake) and asked me to sit in the back of the class. She didn't call one of the nurses to come check on me or have someone walk me to the health center. She told me if I hit my head to go to the health center, which I did at the end of class, and because everyone was so nonchalant about it I told them I fell in class (also because I was extremely embarrassed) and they tested me for a concussion, which I did not have, and sent me on my way. I know people aren't familiar with what a seizure might look like or what extreme depression might look like, but when a student screams and falls to the ground, twitching and shaking, or stands in your lobby sobbing uncontrollably, maybe you should concede that there's something wrong and that the student is not exaggerating or looking for attention or whatever they thought I was doing. Screaming during a seizure is actually very common, but I didn't know it at the time, and I didn't even mean to scream "Oh my God!" I think she thought I was doing it on purpose for attention, because of that scream, and didn't want to give me the attention she thought I was craving.
No matter what you think someone is doing or why, it's always best to err on the side of caution and take someone's actions and words seriously. If I hadn't really had a seizure, the doctors would have figured that out. I think back on that time and honestly can't believe I had a seizure in front of a large group of people, one of whom was a grown adult professional, and no one did anything. I guess if you're not foaming at the mouth and your eyes aren't rolling to the back of your head, that means you're faking it.
Even after I got my brain scan, no one told me I had a slight form of epilepsy. I went to the psychiatrist after my brain scan (someone different than I was originally seeing, whom I really liked), and he told me he got my results and showed them to us. In passing he said, "Okay, so you know you have an underlying focal epilepsy." It was so discreet that my mom and I almost didn't say anything. It was such a big piece of information, but it was kind of muttered under his breath and we almost missed it. My mom asked what he was talking about, and he explained a little more (without much detail) and said we had to find a neurologist.
I was diagnosed with a seizure disorder, but only after having to catch the doctor's diagnosis as he mumbled it to himself. He showed us the brain scans as if we were supposed to be able to tell.
To be fair, I don't think my doctor knew what dysautonomia was. I looked up some information on it after I got back from my appointment and one of the webpages literally said "Print this page out and show it to your doctor when you go to your appointment. Many doctors do not know what dysautonomia is." I suppose I shouldn't be too upset when a lot of people come in with symptoms that don't turn out to be anything serious, but I did research. I brought in a detailed list that tracked my symptoms for the past few months. I told him how I had to quit my job because I was getting so overheated working there and it was not normal. He said "you're fixable," which I think he meant to be comforting, but to me it felt like he was brushing off everything I said and focusing on easing my anxieties. The only anxieties I have are that I won't be diagnosed with something and I'll have to spend the rest of my life feeling sick with no understanding as to why.
I'm tired of feeling sick. I'm tired of waking up shaking, shuttering, nauseated; I'm tired of getting out of bed and sweating profusely and feeling like I have a fever; I'm tired of waking up with a searing pain in my head; I'm tired of waking up with aching legs and feet; I'm tired of feeling dizzy and weak; I'm tired of not being able to do things because I feel so sick; I'm tired of not having any legitimate answers as to what's causing it. I don't know what I can do it help it, and I'm tired of not knowing if my pain is real and caused by something physical.
I'm tired of doctors and teachers and people assuming I'm fine and acting like I'm just looking for attention, or like I'm not trying hard enough, or not eating the right thing, or exercising enough, or thinking that I want to be this way so I have an excuse not to work or do anything substantial. I'm tired of it, and I know other people are too. I just wish I knew how to fix it.