Looking back, I think that my chronic illness began when I was in college, back in 2009. It took me 9 years to be diagnosed with ME/CFS and 10 years to be diagnosed with endometriosis, but their origins were tied to one event. I am writing this as a stream of consciousness, getting it all out of my system, so excuse me if I ramble or go astray.
One night in college in the fall of 2009, I woke up with intense, stabbing pelvic pain. It felt as though I had my period and I was about to have diarrhea and that those two types of pains combined and took a bunch of steroids to amplify their effect. I had just started dating my husband and was unsure what I should do, or even if I should ask his opinion. I wondered if I should ask him to take me to the hospital or if I should wait to see how I felt in the morning. I didn’t think I was dying, just in massive pain, so I decided to wait until morning and avoid an ER visit. I didn’t want to worry anybody and I didn’t want to have to pay for an expensive ER visit.
The pain kept coming and going. I would be hit with that intense, stabbing feeling and it would gradually intensify and worsen for 15-30 seconds, then it would go away. When it hit, I couldn’t focus on anything else. I couldn’t breathe. I couldn’t see. Everything was eclipsed by the pain. It kept happening, so I went to the University Health Center. Now, looking back, I realize how dismissive they were of my pain, something that happens far too frequently for women. I was 21 years old and I didn’t know how to navigate the healthcare system on my own yet.
They asked me to rate my pain. I said at worst it’s a 9, but right now it’s a 3. The nurse replied, “If it was a 9, why didn’t you go to the hospital?” Me, being young and naive, interpreted this as, “You should have listened to your body and gone to the hospital, despite your worries about cost.” Now, I realize that her sarcastic tone meant, “You can’t be hurting that bad, you’re being dramatic.” I was hurting that bad and I wasn’t dramatic. And going to the hospital didn’t help either (but I’ll get to that later). They asked some basic questions, but sent me on my way, saying to go to the hospital if the pain came back.
The pain returned and my roommate took me to the hospital. We wore masks in the waiting room because there was an outbreak of swine flu and everyone else in the lobby seemed to be sick with the flu. At the hospital, they did an ultrasound and told me that I didn’t have any ovarian cysts. They told me it was gas pains and sent me home. I’ve had gas pains before. And I don’t hold in my farts, I let them rip (growing up with two brothers has some perks). It wasn’t gas pains.
The pain continued for two more days, so I went back to the University Health Center. They ordered a CT scan and said that there was inflammation in my abdomen and that I may have gotten some sort of bacterial infection. They gave me a shot in my butt and hoped it would help. I attributed my improvement to the shot at the time, but it wasn’t the shot. Four days had passed by this point and I had moved just enough in my cycle that the pain stopped. When the pain returned a few months later, in the same part of my cycle, I wasn’t afraid of it anymore, but I knew I wouldn’t get any answers from doctors, so I just turned on my heating pad and dealt with it.
I went back for a follow-up a week after the shot in the bum. I had a fever of 102. They said, “did you know that you have the flu?” I felt lethargic, but didn’t have the other typical flu symptoms. They wrote me a note and told me not to go to class, work, internship, or anywhere in public for a week. I never fully recovered from that flu and I think that was the trigger for my ME/CFS.
After that bout of flu, I never woke up feeling refreshed again. I remember what that felt like, but now the memories seem nostalgic, like remembering what it felt like to be a kid and wake up on Christmas morning.
I attributed it to overworking myself in college. I graduated with a 3.7 GPA while working and doing three different internships. My lowest GPA ever was during this semester that I fell ill and missed classes – it was a 3.0. I was taking a full course load, doing an internship with the Ravens three days a week (plus sometimes pulling all-nighters editing footage after games), and on top of that I was working about 20 hours per week as a tutor. Even with all of that, I still kept a very active (probably too active) social life, going to basketball games with friends and going out to the college bars. It seemed normal that I would be tired while doing all of that. One of my professors took notice and asked if I was ok one day after class. He said that he missed my active participation and implored me to “get some sleep, grab a red bull before class, and be ready.” But sleep and red bulls didn’t make me feel any better.
Fast forwarding through the next decade with highlights. I sprained my ankle and it seemed to worsen all of my symptoms in the spring semester following illness. I couldn’t return to my internship my final year in school, but I continued helping on game days. I couldn’t continue working, so I focused on my coursework. I took some time off after earning my degrees.
I worked some for my mom’s company and then got a job in ticketing for a minor league baseball team. I moved to Georgia and worked an insane amount of hours for extremely measly pay. I was surrounded by wonderful people that made working fun. They would tease me for going home to take naps at lunch so that I could make it through the rest of a 14-hour day. I worked 80 out of 81 home games that season, often working 80-90 hour weeks when the team was playing at home. We’d go out to the bars on a Saturday night after a game and then wake up Sunday and keep working. I don’t know how I managed, but we had fun.
I missed home and applied to work in ticketing at my alma mater. I got the job and moved back to my college town to sell football and basketball tickets. The hours weren’t as long as baseball, the seasons weren’t as long, but the pay was just as measly. And I still got teased for going home at lunch to nap.
I continued working Sundays logging tape for the Ravens (still pulling the occasional all-nighter) and the timing worked out perfectly when a position opened in ticketing. I got my dream job, working for my favorite team. I continued working in a fast-paced environment and fatigue continued to plague me. At this point, I thought that I had a thyroid issue and that getting on thyroid medicine would fix it. It took me three years to finally find a doctor to test my thyroid levels, but she wouldn’t prescribe medication because she said that my TSH of 7 wasn’t high enough and I didn’t need to worry unless it was over 10. Then, I found an endocinologist who said TSH should ideally be around 2.5 but needs to be under 4.5. Thyroid issues are fairly common and it should not have been that hard to find routine medical care. For the next few years, I battled with that doctor when she asked about my symptoms and I continued complaining of fatigue even when my thyroid hormones were high. I cried in many doctor’s appointments, wondering why I couldn’t find any relief. But I kept pushing through until I couldn’t anymore. I worked in ticketing for the Ravens for 6 years until my health significantly declined and left me unable to fulfill my job responsibilities.
I believe that my ME/CFS was triggered by the swine flu virus that I contracted at the hospital in 2009. I wonder if I had gotten proper treatment at the health center, or if they had even considered endometriosis and offered that explanation, would I have avoided catching the virus and avoided becoming a person with ME. I don’t think so. I believe that my illness was caused by a combination of environmental triggers and maybe some genetic predisposition that caused a cumulative effect to get me where I am now.
I had the swine flu. At some point I contracted Epstein-Barr virus (mononucleosis) and was never treated for it. My immune system continues to reactive against EBV and retriggers viral symptoms. I sprained my ankle and didn’t have health insurance so I limped around for three months (this was maybe 9 months before the Affordable Care Act went into place and I would have been able to stay on my parent’s insurance, that’s my luck). I overworked myself and didn’t allow my body time to recover. I continued pushing through my symptoms in the fight for my career in sports. I lived in an apartment that was infested with black mold for months while I fought with the apartment company to waive the transfer fee and let me move units. I won that battle and got them to pay for a moving company after the apartment flooded and they ripped up the carpet to expose the mold. I broke my ankle and was misdiagnosed three times, again limping for months until someone found the fracture on a CT scan and I got surgery. I went back to walking 15,000 steps on a gameday after healing from surgery and woke up the next day with leg pain that has persisted since that day in August 2018. I went through two years of extreme stress at work, performing countless hours of emotional labor trying to make people understand why players on the team protested. I kept pushing through each of these things, setting deadlines for myself, like just get to July when you have time off and you’ll be ok. But I continued getting worse.
My ME symptoms are exacerbated by my menstrual cycle and my endometriosis symptoms. Now, I have my period for about a week, then I feel better for about a week, then I feel terrible again as the pain returns when I ovulate and the hormones change. Then my period comes and puts me in a crash. After that initial bout of pain, I complained of your standard endo symptoms at my check-up: pain in the abdomen, lower back and legs, extremely heavy periods, irregular periods, pain during sex, diarrhea every time I ovulate and every time I begin my period. None of the doctors thought that any of this was a problem until 2018. I was still in a boot from ankle surgery and she said, “sounds like endometriosis, but the only way to diagnose is surgery and there isn’t any treatment anyway.” That wasn’t encouraging and I really didn’t want to undergo another surgery. I got an IUD to see if it helped with the symptoms. It helped decrease the heavy bleeding, but the pain continued to worsen. She then referred me to a colleague who diagnosed me based on the symptoms. I have a laparoscopy scheduled later this month.
Over all of these years, my illnesses multiplied with new symptoms arising. Now, I have dysautonomia and cannot stand or walk for longer than about 10 minutes at a time. I get dizzy and my heart races as if I’m sprinting every time I stand up. My blood pressure is never regulated, it’s all over the map, high sometimes, and extremely low sometimes. I still push myself to do things that I know are too much, but sometimes it’s worth it. I have to live my life.
I can still participate in social activities, but only if I rest for days before and after. It takes me 2-3 days to recover from 3-4 hours of activity. I can’t manage more than 3-4 hours of activity per day. Whether that’s reading, writing, working, walking, grocery shopping, talking on the phone, etc. I can’t go outside in the sun or into a store with bright fluorescent lights without dark glasses on because of light sensitivity. I can only use apps that have dark mode on my phone. I can no longer shower because I can’t stand up long enough, but that’s ok because I like baths better anyway. I can only manage two or three baths a week though and I have to lay down afterwards. I never thought that I’d be exhausted just from washing my hair. I can’t drive anywhere that takes longer than 20 or 30 minutes. I lose the ability to focus and I have trouble holding my arms up to the wheel because of the fatigue.
The hardest symptoms I experience are the cognitive difficulties. I used to be so smart. I picked up on new things so easily. I was very good at organizing and streamlining processes. I was extremely efficient, quick to complete tasks, and an expert multi-tasker. I could think quickly on my feet and come up with great responses on the fly during difficult conversations. These traits are the reason why I was able to cope with my illness for so long without letting on that I was unwell. I can’t do any of that anymore and I feel like I have lost my identity.
I was always the smart one in my family while my brothers were the athletic ones. I was always the leader in a group project in school. I was always the most efficient worker, always multitasking and doing everything myself. I was always the responsible one, put in charge of planning things. Most of my friends and family still try to get me to fulfill this role and it’s so difficult now. I often mess things up.
Sometimes I feel like the words are in my brain, but I can’t make the connection to my mouth to voice them. I substitute similar words that don’t have the same meaning. I completely miss words when typing a sentence. I stare for too many moments after someone says something to me, because it takes longer for my brain to process the sentence and form a response. Sometimes people think that I’m not listening to them because of this. I am listening, I’m just slower now. Sometimes I forget the word and describe it in an odd way. For example, “that thing in front of the house where people sit and drink iced tea,” is how I expressed the word, “porch.” I try to read and learn about my illness, but I have to read my doctor’s notes ten to fifteen times and still can’t fully understand them. I am still motivated to do so much, but my brain and my body can’t keep up.
On average, I sleep for 9-12 hours at night. One time I slept for 18 hours straight. A bad night for me is 6-7 hours. If I have anything less than 9, I’ll need a nap during the day. My naps are usually 2-4 hours long. When I do wake up, I feel so much worse than when I went to sleep. It’s like I have to pull my consciousness out of molasses every morning. It’s like sleep is quicksand and the harder I try to get out of it, the faster it pulls me under. But that’s only in the morning. At night, I often can’t fall asleep due to pain and a wandering, wondering mind. As a result, I only have about 6-8 usable hours in the day.
When I say usable hours, I mean hours where I am functional enough to do anything. Not that I can do anything during that time. I only have about 1-2 hours where I can do physical activity, like standing at the dog park or walking around the grocery store. I will crash and fall asleep after those activities. Even vegging out activities take up a lot of energy for me – I have to limit my binge-watching time and social media scrolling time. I can read, but only for about an hour before my brain starts having trouble absorbing content. I often don’t have the energy to feed myself and it’s very frustrating when people tell me, “You look good, you’ve lost so much weight,” because it’s caused by illness.
Making decisions has become extremely difficult. When it comes to eating, I don’t have the energy to complete a meal from the start: 1, deciding what to eat, 2. shopping for the ingredients, 3. preparing it and cooking it. I rely on my husband to help, or we use a meal service kit to make the decision and provide the ingredients, or we order food.
Working is now impossible. I took short-term disability and FMLA leave during the summer. I tried building back up to being able to work, but was never able to get in more than 15 hours in a week. Now, I am a professional patient, because that’s all I have the energy to do. When I have a doctor’s appointment, I almost always crash when I get home and need to nap. I try to always have a rest day between appointments, but that’s not always doable.
I have tried countless treatments. Some didn’t help. Some did, but they won’t cure me, they just make my symptoms more tolerable. I’ve accepted that my illness is chronic and I will never be cured. I don’t see that as pessimism. It’s important to recognize that my illness will always be there. I may go into remission, but I will always need to be mindful of causing another crash or relapse. Even though I’m chronically ill, I am actually chronically thinking about my wellness and working towards it!
Before I woke up in the middle of the night with the pelvic pain that I know so well now, if you had told me this is how I would end up, I probably would have been horrified. What would that young woman think if she knew that she would study and work for 13 years towards a career in sports, just to have to give up her dream. She probably wouldn’t believe it if I told her that she would go to work a game one day, wake up with leg pain the next morning, and that the pain would be there every single day afterwards. What would she think if she couldn’t go to a basketball game and football game after going to dozens of games each year. That she would have to skip birthday parties, bachelorette parties, games, concerts, even just dinner with friends because she would often not be well enough to attend. I think part of her knew that she had to cram in as much as she could possibly muster. She went to birthday parties even when she had to leave at 5 am for her internship the next day. She bought tickets for three shows in the same tour so that she could see her favorite singers. She went to countless sporting events and never turned down invitations from friends. She traveled the world and walked through new cities rather than getting an uber because she wanted to explore while she still could.
Even now that the young girl who didn’t know what was wrong is gone, I can still be thankful for this journey. I don’t have to be thankful for my illness; I hate it so much and I don’t want to be your inspiration. I would give my voice to a sea witch if she could rid me of my illness. But if that girl knew all of these great things she would do and great things she would have, she would be happy, as I am now. Now I know that the guy she just met would stick by her side for the next 10 years (and hopefully forever). I’m glad young me recognized that he would always take care of me, just like that first time I got sick and he brought me honey and soup during that flu. I know that the sleepless nights I spent with my puppy and hours I spent training him would give me a constant companion who sticks by my side when I’m stuck in bed. I know that the cat I got to help with my loneliness when I moved to a new city with no friends would be a gauge for my flares. If Buster lays on my legs, do not get up. He knows when I need to rest and forces me to do it. If she knew all of the countries she would visit and experiences she would have, she would be grateful. If she knew that she would work for her favorite team and be able to share that sense of community and joy with so many other football fans, she would be happy, no matter how long it lasted.
One day last spring, I was exhausted while driving and was on autopilot. All of a sudden, I noticed the trees and the full, lush, green leaves. I remembered the bony brown limbs that were jutting in every direction all winter, but I never noticed when buds formed and life returned. Now, it was all around me. I couldn’t notice anything around me because I was so consumed with one thing – work. I couldn’t focus on my health or my family or my home or my hobbies. I was drowning at work as well. I realized that I needed to take notice of what was going on within my body and around me. Now, I make an effort to notice the changes in the trees, the migrating birds, the subtle changes in the air when the temperature changes. I appreciate the world more now that my participation in it is limited. I’ve learned that I love being able to slow down and I don’t need to be on the go all the time.
I’m still a work in progress. My illness still leaves me with many unanswered questions. But I am now equipped with tools, support, and a community to help me manage. I continue to rack up diagnoses, but am no closer to being cured. I’m ok with that and will continue trying new things to make my symptoms more manageable and tolerable. I am a person with myalgic encephalomyelitis, endometriosis, dysautonomia, postural orthostatic tachycardia syndrome, orthostatic hypotension, fibromyalgia, hashimoto’s thyroiditis, hypothyroidism, depression, anxiety, Raynaud’s syndrome, and autoimmune disease. But I am also so much more than my diagnoses and my symptoms. I’m a professional patient, no longer a career woman, but I was always so much more than my occupation. I am a wife, daughter, sister, friend, and pet-mom, but I was always much more than the relationships that surround me. I’m a Maryland girl, but I am also a world citizen. My illness takes up a lot of space in my world, but there is still space for so much more.