“Hi! My name is Kellie and I am a chronically ill and disabled woman. I have been diagnosed with thirteen chronic illnesses, and am suspected of having more. The most severe and disabling of those are Ehlers-Danlos Syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), gastroparesis, fibromyalgia, autoimmune gastrointestinal dysmotility, and autoimmune atrophic gastritis. Three of those are rare diseases, and I’m very lucky I was diagnosed as quickly as I was!
I first noticed something was wrong when I was sixteen years old and a junior in high school. Life just turned into a tailspin and everything felt off. I would wake up with severe stomach pain every morning and end up in the fetal position on the floor screaming. I also had severe nausea and diarrhea that were both never ending. When these symptoms first started, one of the households I lived in was very toxic and I wasn’t believed. I was mocked and ridiculed and forced to go to school where I would call my grandma to come pick me up. My parent would stand over me as I screamed on the floor and called me a faker, a liar, and told me to suck it up. This continued for most of my life until he walked out and didn’t come to my wedding. He never believed anything was wrong with me and still doesn’t to this day. We haven’t talked in over a year, because I don’t need that toxic mindset in my life. Especially after he called me non-stop to yell at me and call me a faker and tell me to suck it up. And this was recently, I was an adult. The words ‘suck it up’ will truly haunt me forever.
School was difficult already, add being sick to the mix and it was pretty miserable. I had a special bathroom pass from all my teachers so I could leave class and run whenever I needed, and it was an unspoken thing throughout the school that something was wrong with me, but no one dared to ask. Thankfully, my mom was convinced something was really wrong and started taking me to my pediatrician. They couldn’t find anything wrong except anxiety, of course. I’ve had anxiety and depression since I was six years old, so this wasn’t something new to me. But I did know anxiety wasn’t causing the problems I was having. The real problem began when I started losing weight rapidly. Every week when I went into school, I would show my friends how big my jeans were, even though I had just bought them the week before. They were all shocked and so worried my doctors were missing something. It got to the point I dropped from 180 pounds to 95 pounds in a month, and my mom just held me and cried, thinking I was going to die.
I was also put on medical leave from school at this point. So I didn’t physically go to school—a teacher came to my house once a week to give me my schoolwork and then take it back. I ended up getting all Ds that school year and had to go to summer school, but I’m amazed I passed at all. My mom was now convinced I was dying, and honestly I was starting to think I was too. She took me back to the pediatrician, who then referred me to a pediatric gastroenterologist, which is where I received my first diagnosis, irritable bowel syndrome (IBS). IBS is a controversial diagnosis because it’s the go-to diagnosis when they can’t find anything else wrong with you, gastrointestinal-wise. I do believe I have IBS 100%, but I believe a lot was missed then, too, because the doctor was incompetent, to put it nicely. So I got this diagnosis, changed my diet, and put a little bit of weight back on.
I was doing decently. I was able to eat without screaming in pain. I still missed significantly more school than the average person and I was still nauseated 24/7 with very little relief. But I was able to function somewhat normally. Fast forward to my sophomore year of college. I’m nineteen, in marching band, taking eighteen credit hours, and doing really well! School hadn’t even started yet—I was just on campus for band camp and everything took a turn for the worst. The crippling nausea and fatigue set in hard, I didn’t leave my bed for three weeks. I just lay there, heaving into a trashcan, sobbing and begging someone to off me. This is the thing about poor physical health—it drags your mental health through the mud, and I honestly had many days where I wished I wouldn’t wake up, that I’d die. I still have them occasionally when the symptoms and treatments become overwhelming.
I missed most of band camp, and the first week of classes and I wasn’t showing any signs of improving. I couldn’t eat, every time I did I would gag for hours after and be in so much pain I screamed on the bathroom floor of our dorm room. It was decided, with the help of my amazing band director at the time, going on medical leave would be the best option for me. He sat me down and talked to me, and hugged me as I cried. He told me he knew leaving would be hard and I would miss all of my friends, but my health was more important, and I had to figure out what was going on. So, I dropped all my classes and moved back home for the semester. At this point, I’ve switched to an adult gastroenterologist since I was over eighteen, and he has played a key factor into the diagnosis and treatment of my health. He has referred me to multiple specialists who have diagnosed me with other illnesses, he has never doubted me, and he has always advocated for me to get the testing and treatment I need.
After every test under the sun was ran that year, I was diagnosed with severe GERD and gastroparesis. I was also told my GERD was so bad because part of my stomach lining formed in my esophagus due to me being a preemie. So basically, my esophagus produces the acid too, and this explains why I choke on it and can’t breathe. Gastroparesis essentially means my stomach is paralyzed and doesn’t empty like it’s supposed to, which causes severe nausea, pain, bloating, regurgitation, vomiting, etc. A normal stomach empties in 4-5 hours, and mine is still full 12-plus hours later. I’ve been on liquid diets multiple times throughout the years due to gastroparesis flare-ups and was essentially starving myself every time, but there’s nothing anyone can do about it. This disease is absolutely the most disabling and miserable disease I have. I also suffer from emetophobia, which is the fear of throwing up. If someone throws up around me or I throw up, I might pass out. It has happened before. I panic if someone even says they’re nauseous. So what a cruel combo it is to have emetophobia and gastroparesis, a disease that makes me severely nauseous, on the verge of throwing up, 24/7. I must have royally pissed someone off in a previous life.
I started medication for both of those illnesses, and by the time spring semester rolled around I felt decent enough to go back to school. But the remainder of school would be very difficult for me because of my health. I was taking eighteen credit hours of very difficult classes, and missed 20-plus days of class because I was too sick to move. I had an amazing sociology professor who told me as long as I did the work and passed the tests, it didn’t matter if I was physically in class. She also gave students mental health days, which is something unheard of. She was an amazing person and an amazing support system for me to rely on. I ended up passing her class with an A. I also ended up having to stop the medication for gastroparesis because it caused very severe and scary neurological symptoms to start happening to me, and they could’ve become permanent if the medication had not stopped. So, I was back to being absolutely miserable everyday.
I graduated in 2018 with a bachelor’s in social work after finishing my last semester online due to being unable to attend class. The professors in the social work department at Murray State are some of the best people I have ever come across. They are empathetic and understanding, and they truly are the only reason I graduated college. They made so many changes and exceptions so I could finish my degree, and I will forever be thankful for them. I started working at an assisted living facility after doing my internship in that setting and loving it. This was absolutely where I was supposed to be, and I knew the moment I walked in. My residents at the facility where I did my internship became some of the most important people in my life. I was excited and hopeful to have the same experience at this new place. I was ready to be where I belonged, ready to make a difference. New symptoms started showing themselves during my internship, but I ignored them and started working at this new place anyway. I shouldn’t have.
At this job, I ended up lying on the ground multiple times a day due to feeling like I was going to pass out. I had the lightheadedness, chest pain, cold sweats, nausea, etc. These symptoms became so debilitating I couldn’t stand for more than a few minutes without feeling like I was going to truly die. It would hit me and it didn’t matter where I was, I had to immediately lie down in order to prevent myself from passing out. I could feel my bosses getting frustrated with me over it, and I felt so guilty that they hired me, and here I am on the ground, shaking and trying to stay conscious. They would see me lying on the floor and roll their eyes and ask when I was going to get the activity planning done. They never asked if I was okay, even if I told them what was going on. It started to feel like a negative environment, and this made my anxiety skyrocket. So now, I was dealing with insane levels of anxiety on top of being unable to stand. I truly couldn’t function, so I quit the job before they had the chance to fire me.
I thought maybe a desk job would be better, because I would be sitting all day. So I got a job at a call center, and things unfortunately weren’t any better. I still ended up on the floor, because even sitting for long periods of time made me have the feeling I was going to pass out. I felt like the freak show at the circus everyone laughs at. My coworkers stared as I lay on the ground, white as a ghost, trying to function like a normal adult. On top of it, new and severe abdominal pain showed up and smacked me in the face. I spent most of my time at work in the bathroom screaming and crying, not knowing what was going on with my body. I had one coworker who was an angel. She’d check on me throughout the day and make sure I was okay. I ended up getting fired from this job because I was never able to be there, and when I was, I wasn’t doing my job. Out of the four weeks I was employed there, I was only at work for two of those weeks. This was in October of 2018, and this was when my health really took a major decline and has continued to do since.
I have seen 12-plus doctors and specialists since then. I went back to my gastroenterologist and they couldn’t find anything that could be causing this severe pain, and they told me they think it could be endometriosis, so I was sent to a specialist. The specialist confirmed he thinks I have endometriosis, but I’m high risk for surgery due to my low blood pressure issues, so it’s been put on hold for now. Endometriosis cannot be diagnosed without surgery, so for now mine is just suspected. I also saw a cardiologist for the fainting feeling and chest pain, and this is when I was diagnosed with postural orthostatic tachycardia syndrome (POTS). POTS is the dysfunction of your autonomic nervous system, which controls everything your body does automatically without you knowing. Like regulating blood pressure, heart rate, temperature control, pupil dilation, etc. When you have POTS and you stand up, all the blood drains to your feet and isn’t pushed back up to your heart like it should be, so your heart rate skyrockets.
My heart rate was hitting the 200s everyday, just standing up out of bed. On top of it, my blood pressure is super low when lying down, typically 80s/50s, but as low as 50s/40s, and we haven’t figured out an answer for this one yet. At this point, I still had a lot of unanswered symptoms, including joint pain, joints popping out of place and dislocating constantly, muscle pain, nerve pain, and a lot of others. I was sent to a rheumatologist and was diagnosed with fibromyalgia and suspected Ehlers-Danlos Syndrome (EDS). I was then sent to a geneticist who confirmed I have EDS, specifically the hypermobile type. EDS is a genetic disease, meaning I was born with it and have had it my entire life. There were signs of it throughout my life, but no one put them all together until I was 25! I played soccer but never ran because it hurt my knees and my vision would go black. I have always bruised like a peach. You could poke me and a nasty bruise would follow. My wrist popped out of place every time I played my clarinet, but I didn’t know it wasn’t normal. I never knew any of these things weren’t normal, so I never told anyone.
The most recent diagnoses I’ve received are autoimmune gastrointestinal dysmotility (AGID) and autoimmune atrophic gastritis. AGID causes my immune system to attack my autonomic nervous system, and my doctor thinks it’s what’s causing my gastroparesis and POTS. This diagnosis came after being sent to the GI motility clinic for a gastric stimulator consultation, which I am getting! This doctor has changed my life! I receive IV fluids everyday at home for both POTS and gastroparesis, I receive IVIG infusions at home for the AGID and gastroparesis, I have IV nausea meds I give myself everyday at home through my central line, and I’m getting the gastric stimulator to help my stomach work properly. Being sent to this doctor was the absolute best thing my gastroenterologist did, and I’m so thankful for him.
Getting a central line was the worst thing I’ve ever been through. You’re awake for the procedure and it’s traumatizing. I’ve had to go through it twice now, because my first line had a leak and I had to have emergency surgery to have it removed, and a new one put in on the other side of my chest. But getting a central line has also been the best thing for me. I’m finally not dehydrated all the time because I run IV fluids everyday. I give myself IV meds, which work much better than pills. And I get my IVIG infusions through my line once a week. Central lines are dangerous and not something anyone wants, but I am so thankful to have it. Because of my central line, I’m alive and not in the hospital all the time.
The autoimmune atrophic gastritis causes my body to attack cells in my stomach that help with vitamin and nutrient absorption. Because of this disease, I have low B12 and low iron, and will never be able to absorb them orally. So I have to get B12 shots and iron infusions. I also have pernicious anemia from this disease, due to the B12 deficiency. The real reason this disease terrifies me is because it increases my chances of getting stomach cancer threefold. I’m three times more likely to have stomach cancer at some point in my life. This diagnosis was a very difficult one for me to process—I now have to constantly be on the lookout for signs of cancer, and this is completely overwhelming. This disease is also a genetic disease, so I now have two genetic diseases—that we know of.
This portion of my life has been the absolute most difficult thing I’ve ever had to deal with, both physically and mentally. At this point in my life, I am completely disabled. I cannot work, I need help showering, I can’t cook for myself unless it’s quick in the microwave, I use a walker, a wheelchair, a cane, and I rely on my central line to keep me hydrated and alive. I spend most of my days in bed with my 90-pound lap dog watching Netflix and Hulu, and I’m on 18-plus medications a day just to function slightly. It’s isolating, lonely, depressing, and makes me feel hopeless and worthless, but I try to stay in a positive mindset, because fixating on the negative won’t help me. Through all of this, I’ve luckily been able to rely on my wife. We’ve been together since I was sixteen, when all of this started, and they have been the best partner and caregiver I could ever ask for. They take everything with a smile and are happy to help me in any way they can.
They organize my medical supplies, give me my IV meds when they’re home, push me in my wheelchair, cook my food, bathe me, financially support me and pay my medical bills, take care of our dog, who is equally as sick as I am, and do it all without complaining! They are truly a rockstar. I constantly feel like a burden on them and like they deserve better, but they are always there to reassure me neither of those are true. They told me they wouldn’t change their life even if they could, because life without me isn’t a life they want to live. I am truly blessed to have them in my life. I absolutely could not do this without them. If you’re going through something similar, know that while it is tough, you will make it. Even if it doesn’t feel like you will. A support system is key, as well as a positive attitude, or as positive as possible. Disability isn’t a punishment, it is just an obstacle we have to fight in life, and we can all do it!
I post about my health on my Instagram, so if you ever want updates or need someone to talk to, reach out! It is public, so anyone can contact me if they need to! Thank you for reading my story. I share my life on social media because I want to help people going through similar troubles. I’ve had multiple people reach out and thank me, tell me I changed their life, and I’ve made friends in the chronic illness community who have changed mine! Social media is just a small portion of someone’s life, and it’s usually only the good. I wanted to change this by posting everything going on in my life. I post about my dog, my best friends, my wife, my health, concerts I go to, and everything in between. Do not compare your life to others, especially based on social media. Their life may look perfect, but I promise you it is not! Keep fighting and listen to your body—after all, you know it best.”
This story was submitted to Love What Matters by Kellie Woods of Louisville, Kentucky. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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