Disclaimer before we start- Within this article I refer to myself as a girl for personal reasons. I identify as they/them in present time. I also wanted to mention, I'm horrible with dates and times everything is a rough estimate.
This is where it all begins, at 14 years old it’s sometime after Valentine’s Day. one day I was a healthy happy teen girl and the next I couldn’t function. This is my story with chronic illness, and how no one around me believed me.
It was an afterschool night like any other, spending time with my high school boyfriend laughing smiling and having a good time I was showing him how to make my favorite meal, cheap Asian noodles with chunks of tofu instead of meat As I had been vegetarian for years. Suddenly I got a rush of heat throughout my body, I crouched down to the floor the room was spinning. My boyfriend at the time asked if I was alright and told me I didn’t look very well I told him I think I was just too hot standing by the stove and that I needed to go sit down. He needed to leave and go home his mom was on her way to pick him up and my parents were on a walk, I had a gut feeling something was wrong I didn’t want him to leave but I sucked it up and kissed him goodbye. The rest of the night was a blur I looked down at my cheap TracFone to see when my parents would get home, suddenly my heart started racing the room was so blurry I started to black out but continued walking stumbling all over my living room suddenly my body filled with sheer terror my whole entire chest filled with heat and it started to feel as though my body was sinking to the floor I had no idea what was happening to me as soon as I was gaining consciousness I ran upstairs crying absolutely hysterical I called my boyfriend screaming at the top of my lungs that I thought I was dying I kept blacking out my heart was beating out of my chest, he called 911.
Image description: Rebekah at 14 years old months before illness impacted them. pink long hair scrunched smiling face as their childhood medium sized blonde dog gives them and small lick on the chin
I returned to school as if everything was normal, socialized with my friends although felt a little distant. Something did not quite feel right but I put it in the back of my mind I ignored it. Teachers told me I looked pale, sickly and tired. I distinctly remember my cooking class teacher telling me I looked sick asking if I was all right and I ran out of the classroom in a panic thinking that the event was going to happen again and thinking about how embarrassing that would be. Because I thought, it was panic attacks. I pushed on day in and day out I did not tell my friends what happened to me. My boyfriend was the only one who knew. Suddenly it happened again, one morning we went to stand for the Pledge of Allegiance and as I stood up it felt as though my body got dragged into the pits of hell I almost passed out I was seeing stars could hardly breathe, I ran out of the classroom in fear that I would start screaming like I did the first time I ran to my boyfriends class and I was so disoriented he carried me to bushes outside and we hid until my dad picked me up from school. I was a straight A student, I never missed a class, I was one of those kids that never took a sick day. I made friends with every type of kid from every clique. I had plenty of hobbies from art to singing I was an amazing artist and I knew three different languages including sign language. I was incredibly intelligent in literature, I had passions for so many things and loved school and studying. But suddenly all I could think about was not being around other people. I felt like I had a flu times x1000 my eyes felt puffy, I felt lightheaded, nauseous, diarrhea and constipation on and off I was starting to have the shakes, and started having neurological symptoms tingling down one side of my body, started having symptoms that felt like what I thought a stroke would, I would be walking down the hallway in high school and it would be swaying back-and-forth I felt like I looked drunk trying to walk. The more I thought about this all potentially being just anxiety the more anxious I got about being around other people. Eventually it all got to be too much and one day my dad picked me up from school after several missed classes and several days crying my eyes out in the bathroom. I went and took a nap from severe exhaustion and I woke up and could not feel my arms I ran through the Home screaming my dad could not calm me feelings of horror rushed through my body as I did not understand what was happening my arms just felt like they suddenly didn’t exist. “Why is this happening to me “everything started spinning I started to black out and I called 911 from my cell phone. The paramedics arrived and of course they blamed anxiety they started questioning whether or not I smoked pot or did drugs or drank alcohol. Which as a sidenote I never even tried I was kind of a goody two shoes when it came to substance use. My Family kept bringing me to the doctor questioning what is happening to me I started not going to school and eventually dropped out I could not get up off the couch, some days I couldnt use the bathroom on my own, my mom slept in bed with me, I stopped eating properly, I started getting weak I was dizzy almost 24/7. I started to have muscle convulsions And spasms and my right hand started to have tremors. And then then worst part, the screaming in my sleep. On a nightly basis I would scream in my sleep for hours I would have full conversations with my family without my recollection this gave me anxiety thinking that it would happen at friends houses so I stopped seeing my friends all together. I stopped using a phone, complete isolation.
My parents took care of me, my mother received multiple calls from me at work and she’s a champ for that. I was horrified that I was dying I felt as though I was on my deathbed. Every neurologic type episode I had entered me in an emergency room on Ativan drugged out of my mind to the doctors that was the answer. Eventually they pointed my mom in the direction of therapy and psychiatry, they wanted to put me on psych meds. I ended up on Lexapro and Ativan, I was a zombie. I was loopy out of my mind it didn’t matter if I was having symptoms or not I was just happy because I was doped up on way too much Ativan for a 115 pound child. This was no fault of my family, this was the fault of the medical system telling my family this was the cure to my problems telling my family that it was all anxiety and nothing more, I would grow out of it, maybe I was hormonal, maybe it’s a phase, or maybe I want attention.
Soon enough I became overly sensitive to everything around me, the TV was too loud the radio was too loud certain songs and shows triggered what we thought were mental breakdowns. Light was far too bright, During this time I was still in that relationship which turned out to be abusive he started taking advantage of me while I was under the influence of Ativan and eventually I caught him cheating so the story isn’t about him.
Eventually after almost a year of torture, months I can’t even remember suddenly I started going out for walks with my dad things started to get a little better day by day and suddenly I felt recovered. I believed it was the medication, at this point I was no longer taking Ativan just Lexapro. And eventually I went back to school I enrolled in a alternative school with just a handful of students it was still on the public school campus but it was easier for me to catch up on my credits and also acclimate to social life again. On the occasion I would have these episodes of almost blacking out, with heart racing and neurological symptoms which I would just run to the nurse or have someone escort me at its worst they would call 911 but I was somewhat functioning just much more shut off from the world. I started speaking with my friends again, I did not tell them what happened and if you where one of my old friends reading this I am sorry I thought it was temporary and I was scared And I still think about you every day I’m sure.
Image description: Rebekah again unknown age standing in mirror taking selfie with mid 2000s camera wearing emo fashion Tshirt and skinny jeans and pink hair looking sad and underweight.
After a horrible break up with that last boyfriend I got in another relationship. Once I turned 18 I moved in with him there was a lot of stress involved in that move and I had what I believe may have been a miniature stroke in my sleep the first couple weeks of living with him. Him and his family turned out to be quite abusive, belittling, they thought I was attention seeking, they thought I was faking, they threatened to kick me out often which as an undiagnosed autistic I had no idea how to be independent I was terrified. I did not know people could be so cruel. I was stuck in a bedroom for a year bedbound most of the time being ridiculed, called fat although I was under weight and vegan, called lazy you name it. Every time I stood up the floor would start spinning, my vision would flash bright colors, I would scream in my sleep and have what felt like strokes I would wake up with 1/2 of my body not working my face felt like it was slightly drooping. I would slur my speech, I would have seizures but I was cognitive so I was under the impression they were not seizures. I went to the emergency room several times, one of the times I came out prediabetic at 115 pounds 5 foot two I could see my ribs and a male doctor told me maybe I needed to lose weight and that’s why I was having the symptoms I was. I fainted on several occasions I would go to the emergency room trying to figure out what was happening sometimes I would be so weak and shaky they would wheel me out in a wheelchair and tell me it was all in my head. There were some nights I would fall asleep and wake up not breathing, several times a night once every five minutes. I called 911 that night and they told me it was anxiety. Eventually it got so bad I could not walk my legs were shaking, I was walking with a strange gait I can’t remember how long it lasted but I went into a primary care doctors office it took all of my effort and energy clinging onto my boyfriend at the time. She looked me in the face and said it was because I was vegan and maybe I didn’t have enough B12. I started religiously taking vitamins I started thinking only positive, praying, I became a spiritual you could think one could I was the poster child of toxic positivity this of course was because my partner at the time was a occultist hippie. He convinced me the reason I was so sick was because I was depressed, I wasn’t taking enough vitamins and minerals and wasn’t doing enough manifestation. I ended up getting told by the emergency room that I was required to see a mental health specialist because of how many times I was coming in for my supposed anxiety. I met up with the specialist, I told her I was not interested in any medication‘s, she told me if I did not take medication there was no potential of me ever getting better. And I never saw her again. Soon enough of the abuse I was dealing with at this exes house was horrendous one of his family members had taken my identifying information like my Social Security number and insurance card and started trying to get me into a psych ward she had also called around trying to tell all the physicians in the area that I was manipulative and faking my symptoms and to not listen to me. She was affective when I called to try to make any appointment to get assistance for almost 7 months of living with them after this point I was denied and told it was because of her and that they could not work with a manipulative patient for their practices safety. I was horrified. Eventually I stopped asking for help, I stopped going to the emergency room, I stopped talking with my boyfriend I stayed shut in the bedroom for the rest of those seven months scared, thinking I was going to die at any moment. Going through some of the worst symptoms I ever had I decided it was going to be the first time I ever looked up my symptoms online of course I was smacked in the face with all these horrible things, cancer, MS, brain tumors. I started to panic I wasn’t very tech savvy I didn’t have a phone of my own I was using my boyfriends and eventually he just gave it to me because I was on it so often. This symptom searching didn’t help anything it stressed me out tremendously and I did not do it properly.
Image description: Rebekah just turned 19 after running away from this previous mentioned abuse. short emo cut pink hair with flower crown snapchat filter in passenger seat of exs car black lipstick
Eventually suddenly I went into a remission type state again, I decided to run away from the abusive household and live back with my parents again I was 19 years old at this point. This was short-lived staying with my parents for only about a week I was in a very fragile state of mind and I got into a relationship with somebody who was very very bad. The whole relationship I stayed in remission but went through some of the worst trauma of my life, he had attempted to take my life among a lot of other things. I was homeless, scared and started to stop trusting people. At this point to relieve my stress I tried cannabis for the first time, it really was a beautiful thing for me. Eventually I ended up living with my friend for a little while. His family was untrustworthy and they ended up lacing my marijuana with bath salts, a very heavy drug, and I relapsed again. The neurological symptoms, the seizures, the brain fog, the impending doom feeling, heat intolerance, the screaming in my sleep, the strange balance issues, fainting, gait, And now a fear of death that I did not have prior..
A very short time after this I got into a relationship, I was seeing this person before I got drugged. He tried to help rehabilitate me, He was very interested in medicine and drugs his mother had a terminal illness. He insisted I kept going to the doctor he did not believe it was anxiety. So I got a new doctor I had not seen a primary care doctor in far over a year. I and Had stopped trusting the emergency room. This new doctor was the start of my life changing forever this was the fifth year of me being disabled, and not even considering myself disabled. He asked me what I thought it was, I told him maybe MS or seizures as somebody in my family has epilepsy. He sent me to a neurologist and movement specialist, there I was diagnosed with functional neurological disorder which they said was causing my tremors and some of my neurological problems, and suspected epilepsy in 2018 shortly after that I was diagnosed with asthma that my doctors used to say was just anxiety or allergies. Eventually I started having episodes where I could not see, I called them staring off episodes which later we found out what were absence seizures. I went to the eye doctor for them, he saw that I was going blind in my peripheral vision I was losing vision on my right eye, and I had pseudo papilledema which he diagnosed me with a rare eye disease called optic nerve drusen. He then told me that he strongly thought I had Ehlers Danlos syndrome I do not know what brought him to that conclusion but it was the first time I ever heard of EDS, he was also so concerned about multiple sclerosis that he wrote my doctor a two page letter that I still have to this day. It was at this time in my life, a little bit before my diagnosis I started using a cane and a very cheap $60 wheelchair just so I could start getting out of the house. I did not wanna be bedbound for a third time in my life. I had a service dog that was helping me with my PTSD and seizures as well. Due to unfortunate circumstances I no longer have her.
ID: Rebekah from beginning 2018(?) in hospital style cheap wheelchair slightly gained 40lbs, head cropped out of photo wearing all black belly shirt and jeans
Eventually I went into remission. I started working a job , I started going to college, my brain didn’t feel quite the same although I tried to ignore it. I got back into my hobbies I started doing my paintings and artwork, I started hula hooping, singing and writing music and I even picked up ukulele. I started trying to make up for the years lost, I was in my first apartment I was gardening on my porch I was just trying to live my best life. I worked two jobs within a year. It was very hard to keep a job I started to develop severe back pain and neck pain and knee pain, the base of my skull would start crackling and popping it started to feel unstable. I started to have to sit at work a lot I would sleep on my days off I could hardly move when I wasn’t working. I was exhausted all the time. But I kept on pushing it and trying to hide it from people. Eventually some more traumatic events happened and I was officially diagnosed with PTSD and OCD. This was a hard time in my life.
In the beginning of 2020 I got my heart broken by someone I had a crush on and then I got what is thought to be Covid. And boom, another relapse. I still didn’t quite understand it wasn’t fitting FND completely I lost my job I lost my apartment and I moved in with a new boyfriend after being single for quite some time. I got a new doctor when I moved in and she took one look at me, and my chart and I saw her eyes lit up “You do not have anxiety” was one of the best things I think I had ever heard.
Suddenly hundreds of tests were being run, I was being seen weekly, all while I was trying to work a new job, quit that one and then started my dream job. I started to deteriorate as I was getting lots of testing poking and prodding and questioning and was trying to work a full-time job 80 hours a week. I tested ANA positive she started sending me out to specialists I was becoming quite overwhelmed. I started to become symptomatic again and relapsed then my new doctor really got to see what it was like she was baffled, my blood pressure started dropping to 60/40 and would shoot all the way up to 200/170 I was put on emergency blood pressure medication in the emergency room which shot my blood pressure higher and we had fears for a possible pheochromocytoma as we found out I had a small tumor on my adrenal gland, eventually she came out to me and told me that she was also disabled, she had her service dog at home and she too was a girl unheard. She was told it was anxiety and that it was all in her head.
ID: Rebekah at 22 or 23 face selfie septum piercing bright red long curly natural hair vintage cat eye mint green glasses smiling in black hoodie that says "freak show" in neon.
Then my diagnosis of Myalgic encephalitis, postural orthostatic tachycardia syndrome, and superventricular tachycardia All hit me at once like a semi truck Hearing that from her brought on relief but once she told me “I’m sorry finding treatment for chronic illnesses can be really tricky” I felt my world shattered. “Chronic illness?” Soon it was discussions about mobility aids, accessibility, at home safety, Social Security disability, I had my first iron infusion, and being told that my disabilities will be lifelong. 5% of people recover from M.E and I have a severe case, and one thing she never told me was the stigma behind the diagnosis.
Soon she partially diagnosed me with autism, then Bam suddenly hemiplegic migraines and finally a diagnosis for epilepsy from a neurologist she sent me to, it was all too much. Part of me just wanted to curl up and die. And then I started reaching out to the community, I dabbled here and there in the past but I really put myself out there in 2021 and didn’t look back. Soon I found so many people with the same comorbidities that I have one of the main questions I had was “why do I have so many things wrong with me?” Which my doctor told me she suspected I have hypermobile Ehlers Danlos syndrome she told me people with EDS are much more likely to have several chronic health conditions as it’s progressive, this was the second time I was told I might have hEDS but she told me that she did not want me to seek a diagnosis at that moment because I had so many emergent things going on at the time.
To this day after her extensive studying on me her extensive testing and research and notes and her saying she knew for a fact my anxiety and depression were secondary symptoms to my major and severe chronic illnesses doctors still do not always listen, emergency room staff still roll their eyes I am still a second class citizen sometimes and I have lost friends and family and that is why I’ve made this blog to post about my journey and no longer be unheard and invisible regardless of whether I am in remission or not. I have many more chronic health conditions since my initial major ones, some from medication side effects some from the suspected Ehlers Danlos syndrome. But I am grateful to finally know I am not alone and I am not crazy.
And I hope you will join me for this ride. Thank you for taking the time to read this.
UPDATE: 01/15/23 This is Rebekah the author of this blog! I just wanted to update and say I got officially diagnosed with heds this month and In the last year I've been tested for several other things such as, lupus, mixed connective tissue, iih, SPS, MG, I've had MRIs and emgs and scans elsewise and nothing else has come up, which is wonderful news. It is so good to understand what's going on with my body after all of that trauma, it's hard to recount everything the timeline is getting blurry and my memory is starting to slip a little due to neurological issues but I'm glad I got this message out when I did. My PTSD is also taking a lot of my memories about these types of things from me. When I read this blog post I get hit with the feeling of "oh god that happened to me.." it's definitely hard for me to read. Thank you everybody who has read this blog post and supported me through my journey I love you guys so much 🖤💞 I'm finally ready to do some inner healing from medical trauma and other traumas I've dealt with I'm working closely with a psychiatrist and therapist that have supported me greatly. My medical team is very supportive now that I live somewhere that has good medical Care and I no longer live in a small town. I still deal with my challenges within the medical system, I think all chronically ill people do unfortunately there's a lot of Injustice. But I'm happy to say that I can accept myself for who I am, understand that it's not anxiety, and find ways to live my life to the fullest again.
some photos below <3
ID: rebekah hair black and blue in large power in messy bun chair in dark black outfit overweight army print slip in shoes. they are holding up a peach sign in full body mirror
ID 22 years old top part of rebekahs face tired sad eyes yellow hospital mask messy red hair laying on CT scan table
ID rebekah 24 years old standing in black cloke and colorful pants with black cane and black lipstick shaved head
ID rebekah 24 showing elbow popping out of place laying in bed (photo for doctors to evaluate hEDS symptoms)
ID: rebekah 24 fat with tattoos standing in black dress pretty smile holding dress up and wearing high knee socks black with white stripes blue straight wig and black beanie hat
ID: rebekah sitting reclined in white blanket and black beanie short pink hair tattos fat with demon stuffed animal at IV clinic getting treatments