“I’ve been sick since I was three. It had become such a normal thing to go to doctor or get my blood drawn, so I really thought it was normal. It wasn’t until I developed anxiety and multiple burnouts as an adult that I realized I have to really deal with my childhood medical issues and trauma, and it was not normal.
Some of my earliest memories involve doctors appointments and medical trauma. At 3 years old, I suffered through chronic headaches—they were so bad I shouted at my mother, ‘Please rip my head off, I want a new head!’ I can’t imagine what her trauma must be like as a new mom not being able to help her own child. Before I went to school, I had three surgeries due to chronic tonsillitis and paranasal sinus infection. This means I had a tonsillectomy, adenoid surgery, and enlarged my sinuses, as my paranasal sinuses were too small. I apparently said to my mom after one surgery, while I was in pain, ‘Mom, I think I’m gonna die.’ I can’t remember this myself.
When I was 8, they admitted me for observation in a hospital for a week. They needed to install a cannula to the back of my hand for medication. I had very small veins and having the cannula was always previously painful. I knew I didn’t want it. It took my mom, three nurses, and a doctor to get the cannula into my arm while I screamed from the top of my lungs. I had no say over my own body. Even as an adult, I struggle to have boundaries or keep my ground, as I never learned how, because what was done to me was always decided by doctors or my parents. I had no will.
During this hospitalization, every morning a nurse would come before dawn to take my blood. The first time she shamed me to get me to cooperate. She shamed me about my reaction to the cannula, saying, ‘I could hear you all the way down the halls of this hospital while you were screaming. You want to be a good girl, don’t you? So show me how you won’t scream while I take your blood.’ I called my dad at home and said, ‘Daddy daddy, come look while my blood is being drawn and I’m not screaming.’ He visited. This lead me to my second conclusion about myself, about why I am such an impossible people pleaser, again without will of my own: I was rewarded by my father when he came to visit me. So, in other words, I learned that my will or my body was not important, and disregarding all my own feelings on these matters, abiding without question, was important. That is how I grew up.
At 12 years old, I got an asthma diagnosis and the headaches turned out to be epilepsy, which was diagnosed a few months later. So my list contained three surgeries, countless hospitalizations, and two official diagnoses before I went to junior high school. Wow. And I survived. I went to violin camp in the Czech Republic during the summer of 2008, when I was fresh out of high school. During that trip, I apparently got campylobacteriosis, a stomach bacteria like salmonella, but for me it went unnoticed and without symptoms. A month later, after a night out in the town, my left knee swelled. I went to the doctor, where they drained the fluid and suggested I might have tripped over while being drunk.
A week later the same thing happened—my knee was swollen, drained, cortisone injected, and I was sent home. It went on like this for four months before I got to see the local public healthcare system hospital rheumatologist. This old man, close to retirement age, told me I was not fitting any criteria. My blood work came back normal except for being HLA-B27 gene positive. This was not enough to give a diagnosis, so reactive arthritis it was. A month later, I went back. My knee was still swollen and I got Oxiklorin as medication. The side effect was horrific nightmares so bad I was scared to go to sleep. Looking at the medical records later, I apparently took this drug for almost 8 months. Can you imagine eight months of vivid nightmares?
Still the doctor was undecided. My medical records describe me being ‘overly sensitive to pain,’ ‘hysterical,’ ‘demanding,’ ‘distressed’ and more nonrelevant information. Only after I did the research myself, demanded methotrexate as medicine, and an MRI, things started moving. An MRI was eventually done with an inconclusive result, so I was put on waiting list for knee surgery.
I was depressed. More trauma followed, this time from my former best friend. She told me, ‘You are too depressing to be around, all you talk about is pain, sickness, and your knee. You need to change the subject and hold it all in or I won’t be your friend anymore.’ So I learned again, being sick is not something other people want to hear about. They want to hear happy things. So if you’re sick, you’d better pretend not to be, or you won’t have any friends. And so I did. I became very good at this denial as a defense mechanism—later I would have to go to therapy to acknowledge any illnesses even existing.
During the summer of 2009, I finally had my knee surgery and began physiotherapy. I had walked with crutches for over a year at this point. The muscles in my left knee had deteriorated. In the fall, I went to the Finnish Rheumatology hospital for a rehabilitation period. In the first period, they wrote in my medical records, ‘Patient seems to have developed wide spread pain syndrome, diagnosis fibromyalgia, no other obvious issues.’ During the second rehabilitation period, I traveled via bus with my swollen knee so they could see with their own eyes I was not okay. This time medical records stated, ‘Clearly something more concrete and severe is going on, we recommend a biological drug to be started immediately.’ The local rheumatologist in my home town refused the medication order, as it was only to be given to patients with more severe symptoms. Not being able to sleep because of the pain was not enough.
For some years, on methotrexate, I felt better. So I decided to dismantle medication on my own, as I felt I was healed. I went to Beijing, China for my student exchange. I got salmonella and my knee swelled up again, as I had no methotrexate anymore. The most interesting experience was going to a Beijing hospital for the same procedures I had back home. Thankfully, I had watched a lot of Grey’s Anatomy over my painful sleepless nights, and I was able to communicate about medication and symptoms. But this was trauma too: I had to miss out on the exchange student life experience entirely. I was lying alone in my dorm room with my swollen knee for the remaining four months out of six total months in exchange. I am still not over that experience.
After graduating university, I got my first job and started to have severe back pain. Even during the previous summer, my neck had been very stiff, but I didn’t think anything of it. In the fall of 2015, I finally went to a rheumatologist again. This time the experience was quite different. My head would turn only 20 degrees to each side and he immediately wrote a statement for the social insurance institution. I needed a biologic drug. So, in 2016, I finally got medication. It came 8 years after this drug was suggested to me in the first place. For eight years, all the other rheumatologists had not been able to get past what the retiree had written in my medical records. That I was complaining about nothing. Humira has since saved my life. I’ve been able to start exercising, I’m even going to compete in wellness fitness and I belong to an actual fitness team now!
I believed I could really make myself feel better after graduating university by losing weight, eating healthy, and exercising. During this time, it never occurred to me that mental health might be important. I wished we could create a safe place where mental health is not a synonym for being crazy. Because although I took my meds and went to a doctor, I never thought myself as sick. I was just ‘normal.’
Soon, a recession hit. I had seven jobs over the course of six years. And for three years in a row, every autumn, I would have burnout symptoms. These started 2017 and ended last Christmas, in 2019—when my body finally gave in, as my mind would soldier on without ever noticing any of the signals my body was giving. I had high blood pressure 149/99. All of my emotions came right out of me, I had no self control—I cried over almost anything. My heart rate was elevated to 120 bpm at all times, even when I was sitting down. Doctors wrote me notes for a total of two and a half months of sick leave. The conditions at my previous job, which led me to this state as well as my own need for perfection, didn’t change even when I asked for help, and eventually I resigned.
In 2020, before the pandemic outbreak started, I had been in therapy for a year. During the first year with my therapist, I realized I am actually chronically ill. Even though my conditions are manageable, they will be with me forever and I need to accept my limitations. I need to be empathetic and forgiving toward myself. Otherwise I won’t survive for long.
I read all my medical records to accept my illness. I cried for weeks over them. I had no recollection of how bad it had been and what I had survived—fighting doctors who dismissed me and told me it was all in my head. I went through the five stages of grief, though I was in denial for 10 years. In therapy I got to finally accepting. First of all, being sick is not normal, and secondly, it is okay I am sick, and now I just have to figure out the best way to manage it.
I started my Instagram account in 2018. It was a fitness page first, but during therapy I began to have a calling to tell my story and provide peer support. I was scared to ‘come out,’ as I had hid my illnesses for so many years. I had so many trust issues with other people and I was afraid. The pandemic really turned my head and I reminded myself this is my life. If others can’t stick with me through this calling, then so be it.
While I was deciding to use my Instagram to tell my story, I searched hashtags of chronic illness. And what I found truly blew me away! I found hundreds of people like me, with autoimmune illnesses, from all over the world telling their stories! I was astonished, I was not alone anymore. Most people I know tend to keep to themselves, so this was new for me. I decided to make my account international.
Although I have never met the people I speak with everyday from Canada, the US, the UK, Germany, Australia, Sweden… they are my community and my family. These people and I have common ground, as it generally takes eight to ten years to get an autoimmune disorder diagnosed, regardless of location. Almost every time I meet a new person online we hit it off immediately, because we share the pain, we share the doctor’s neglect, we share the experiences of people dismissing us, and this is where the unconditional love resides.
I have been given at least as much as I give myself in my Instagram account, and I am truly humbled every time a person contacts me and says they relate to my story. And that is exactly why I’m willing to be vulnerable, to tell all my innermost painful experiences. Someone else out there might feel the same love and revelation I did when I found the #chronicillness community.
Here is my advice to newly diagnosed: You are not alone. Join us in the Instagram community, you’ll find so many people just like you! Forgive the healthy people, chronic illness is something you get only when you get it. Even my family really doesn’t get this and they lived through it with me.
So this is me, adding the importance of mind and spirit health in handling chronic illness, not only diet and exercise. Only after my burnout last winter, and during this pandemic, the holistic approach of wellbeing has become a theme in my life. I speak from experience, from places of pain and trauma, and when I figure it out, I will share it with you!”
This story was submitted to Love What Matters by Johanna. You can follow her journey on her blog, Chronically Johanna, as well as Instagram and Tiktok. 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.
Read more stories from the chronic illness community:
‘Ma’am, have a seat.’ I wanted to scream, ‘Look at the scar down my chest, I’m not making this up!’ but it was too late. They didn’t believe me.’: Woman finally diagnosed with invisible illness Myasthenia Gravis after 6-year battle
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