In the Company of Others

4:26 PM chronicmigraineellie 0 Comments

Hi everyone! This year, I participated in In The Company of Others, an orientation program that shares experiences from college students to incoming freshman. As I have a not so typical freshman year story, I figured that I should do it and share my experiences. After a week of writing and rewriting our scripts, we performed them. Here's my performance. I will put the text below so you can read it as well. Hope you all enjoy!

Hi, I’m Ellie and I’m a sophomore.
When I first think of February 8th, 2016, my mind goes to laughing with my best friend while watching Hannah Montana at 4 o’clock in the morning. It seems so normal until you take a step back and look around at our environment. We’re in a hospital ER room, with white walls and fluorescent lights waiting to find out whether I had a blood clot in my arm or not. This was 4 days after I had been in the ER for pain and swelling in my arm and was sent home with a wrong diagnosis and a dismissal because I was “too young” to get a clot. Watching TV with my friend, I forgot about the IV digging into my vein, or of the potential consequences of the test results that I was waiting on, or even the fact that my parents were frantically trying to find a red-eye from LA to anywhere close to Hartford so they could come and make sure that I was still alive and breathing when my dad landed 8 hours later. Watching this TV show from my childhood about living a double life, I realized that I also live a double life, not as glamorous as Miley’s, however. I wear two masks; that of a healthy college student, and that of someone living with a chronic illness- constantly sick and fatigued.
February 4th, I was taking notes in my social psychology class and suddenly got this intense burning pain in my right arm. I figured that it was just from fervishly writing, and there was only about 15 minutes left and I could probably tough it out. The pain got worse and worse, and finally I was able to go back to my dorm and call my parents. I called my doctor at Yale, because Davison couldn’t see me until 3 hours later, and I feared that I had a blood clot. See, I’m at risk for blood clots because I take birth control to manage my hormones for my menstrual and non-menstrual migraines. However, when I went to the ER, they blew me off. I told them my medical history and that I knew I was at risk of clotting. Then, I was lead to a room for 2 ½ hours, alone while the pain migrated from my right upper arm to my hand, making the area around my thumb blue and swollen. I could barely touch my thumb to my index finger. There was no one at the nurse’s station, and when the doctor finally came in, he dismissed my symptoms. I was too young to get a clot, it definitely wasn’t a clot, my hand definitely wasn’t swollen, but they might do an ultrasound “just to make me feel better.” At this point, I had been there for 3 ½ hours alone, I was tired and I didn’t know what was going on. So they discharged me with a wrong diagnosis that they all knew was wrong. 4 days later, I was brushing my teeth, about to go to bed when I feel a shooting pain in my hand. I knew that the clot was back and much worse than before. When I called PSAFE, I told them to call an ambulance. I didn’t want to walk in and be disregarded again. However, the ER doctor saw the note from that Thursday and refused to do any tests. I had to threaten to go to another hospital because they said that I would have to wait 5 hours to get an ultrasound and that they wouldn’t run any other tests. After an hour of arguing, phone calls and pleading, they finally gave me a CT angiogram with dye, showing that I did in fact have a clot in the right brachial vein of my arm. The doctor apologized, saying that she was wrong to dismiss my symptoms and that she was inspired by how well I advocated for myself. Do you know how common it is for women to get clots blood on birth control? 3%. 3% of women develop clots, and I just so happened to be in that 3%.
5 years ago I was diagnosed with chronic, intractable migraines. Chronic meaning that I had more than 15 headache days per month and intractable meaning that they couldn’t be stopped by medication. Migraines, contrary to popular belief, are not “just headaches.” They’re a complex neurological condition that has many symptoms triggered by various factors. For me, my worst triggers are bright lights, high sounds, vibrations, gluten, soy and anything with tyramine, which is most commonly found in aged cheeses and red wine. Which sucks because everyone likes cheese and wine.
Now, Everyone memorizes different things about their lives, whether it’s lyrics from their favorite song, their favorite poem or something else that they enjoy and hold onto. For me, it’s my medical history. I can give you the names of all 10 of my doctors, and yes you heard that right. I have 10 separate doctors who oversee my medical life and their office addresses, and that’s not even including the ones who gave up on me because my case was “too difficult”. I can give you my entire medical history in under 5 minutes because I’ve gotten used to fast intake meetings with doctors who did not bother to read the information in my charts, whether they’re at an ER or a doctor’s office. I can tell you every medication that I take and have ever taken, including dosages. Today, the number of pills I take per day is 7. A couple months ago, I was taking 12 a day. This doesn’t include my abortive medications either, that I take when I have a migraine. The funniest part of my medical life is that if you put my file in a nursing home and just changed my age, no one would question it! That’s because I am the youngest person in the US to have ever been put on an anti-Alzheimer’s drug for migraines, and up until 3 weeks ago I was also on a blood thinner. I also take Centrum Silver daily vitamins. My friends joke that I am a Jewish grandma though, because I love naps and am always prepared for everything. I always have snacks, aleve, lipstick, band-aids and usually whatever else is needed at that time.

But 4 words have come to typify my life: “But You Don’t Look Sick.” I don’t look sick because I don’t tell others how I feel all the time. I use makeup to cover up the bags under my eyes, and balance my skintone because if you saw how pasty white bordering on green my face is when I’m feeling badly, you’d ask me if I was okay. And that’s just the thing. I am okay. I’m okay until I’m not. I can function decently well with a pain level of 4 out of 10, but I’ve learned how to fake it and to hide my fatigue, memory and word finding issues. You don’t what it’s like to lose control of your body until you can’t control it anymore. I’ll be in class, taking notes and listening, when suddenly I just get this feeling. I get really tired, like the kind of tired that you get after pulling two all nighters in row. I start to feel my body go weak, as if I can’t support my own weight. It suddenly becomes hard to find words, let alone even put together coherent sentences, making communicating what I’m going through much more difficult. I start feeling like I’m going to faint. Add together those feelings with intense nausea and dizziness, with a serving of pounding, intense pain, and that’s my typical migraine.

I’m not sure if it’s good or bad that I’ve gotten so good at hiding my symptoms. Yeah, I can get to more classes and appear like I’m a functioning human being, but at what cost? In the chronic illness community, there is a term called “spoon theory”, and it’s used to explain why we become so easily fatigued.
 I’m tired all the time, even everyday actions like taking a shower become something that takes monumental effort. In a day, there are certain things that most people do, like showering, doing dishes, getting dressed and going to classes. Spoon theory explains that each activity uses up a certain amount of spoons, of which you only have a certain number per day, which I’ll say is about 10. There will be some days where 10 spoons will be enough, but other days when you come up short and can’t do certain activities because you don’t have enough spoons left. See, it became necessary to create a theory in order to talk to non-ill people about our illnesses. That’s because people don’t like hearing about invisible issues. In their eyes, I don’t look sick, therefore I can do everything that an able-bodied person can. There’s a certain shame that’s associated with having an illness, be it mental or medical. I used to be scared to tell people about my migraines, because I thought that they would not want to be my friend if they found out this deep dark alternate person that I become when I have a migraine. It’s true though, I do have a different persona when I migraine. One of my exes called it “Ellie’s world is ending” attitude because everything becomes extremely negative and depressing and because of the pain I can’t think or rationalize anything. I get stuck in these anxious spirals that just add onto the physical pain that I already experience. I don’t usually let anyone see me. Even my family rarely sees me during the worst parts of a migraine. When I’m starting new relationships, I don’t trust easily. I may tell the person about my migraines, but just the bare minimum. Not the fact that I spent my junior and senior years of high school visiting the Outpatient Pain Center at Ceders-Sinai 3-4 times a week, instead of being in class. I don’t tell them that I lost almost all physical ability for almost two years, that even washing the dishes was enough to force me to get back into bed for 4 hours just to recover and be able to sit up again. I don’t tell them about the nights that I can’t sleep and how I cry at 2 o’clock in the morning because sometimes, dealing with this illness is too much to handle. I often feel like I’m burdening others if I ever need help, and this includes romantic partners, and no matter how much that they try and assure me that they want to help, it’s hard to believe them. I’ve been in too many situations where their actions don’t match up to their words. See, I’m difficult. High-maintenance. I have numerous food allergies making it difficult to eat out sometimes. I used to not be able to go to the movie theatre because the sound and lights would trigger migraines for me. I can’t keep all of the plans that I make, because I never know when I’ll be incapacitated. I live in the unknown. It’s a disturbing place for some people, but recently I began to appreciate it because that is my normal. Every morning starts with the question of, “Can I get out of bed this morning?” or am I in too much pain to move. I live my life with contingency plans carefully thought out, so when something happens, I already have a plan of action and can deal with it. Living with an invisible, chronic illness isn’t fun. But not having people to talk about it with makes it so much worse. It is already an isolating, solitary experience. So, if someone you know who has an invisible and/or chronic illness, I’m asking that you listen to them a little bit more carefully and try to see it through their eyes. The people that have done that for me are some of the most important people in my life, and they have helped me be able to actually live my life instead of living in fear of my migraines.  Thank you.