‘My teachers put me down, and friends drifted away. Without a diagnosis I was an anomaly.’: Woman diagnosed with HSD, other chronic illness urges ‘take your loved ones seriously if they say they’re unwell’

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Disclaimer: This story mentions of suicidal thoughts and may be triggering to some.

“I sat on the couch of my Brussels apartment, 14 000 km from home. Sobbing on the phone to my parents, I told them that I didn’t think I could be a musician anymore. I had known this for some time, but had finally worked up the courage to admit it to someone other than myself.

Over the past three years I had become increasingly unwell. Dismissed by doctors, psychologists, and physical therapists, I simply started ignoring my symptoms and pushed ahead with my plans to move to the other side of the world to pursue my life long dream of becoming a professional trombone player.

At first I was excited. A combination of adrenaline, OTC medications, and sheer will power kept me hyped up during the move. I was meeting new friends, attending world class concerts, and enjoying the beautiful scenery and architecture of Europe. However, a few months after settling in, things took a dark turn. I started having blackouts, my legs were collapsing underneath me when I walked, and I was waking up with a bright, hot, burning pain covering my entire body.

And now I was stuck here…alone…in a global pandemic. My literal worst nightmare was unfolding.

woman holding a mug in bed
Courtesy of Jessica Gregory

Growing up, I had already struggled with illness, and was extremely fearful of the idea of moving cities or doing anything independently. I suppose I had a strong gut feeling that this wouldn’t be a good choice for me. I saw countless doctors about my chronic pain, fatigue and joint dislocations from the age of 12, but after being ignored time and time again and having my friends and family tell me how proud they were of everything I had achieved despite my pain, I felt I had no choice but to shove down my (it turns out reasonable) concerns and start masquerading as an abled bodied person.

This came to a head for the first time in high school when I developed symptoms of Hypoadrenalism. Hypoadrenalism is a rare condition in which your adrenal glands can no longer produce an adequate amount of the stress hormone, cortisol. It can have multiple causes, but in my case, it was due to the long-term use of steroids for asthma management. When left untreated, Hypoadrenalism can be dangerous, and in extreme cases, fatal. Despite this, I was not warned by my doctors about the potential side effects of long-term steroid use, and I was diagnosed with Depression and referred to a psychologist when I first complained of symptoms.

It wasn’t until I had lost over 15kg, physically could not stand upright during the day, and had compromised vision that I practically demanded to be seen by a new Endocrinologist, and was finally diagnosed and treated correctly. This process took almost four years, and in the meantime my school was completely unsympathetic.

woman in bed
Courtesy of Jessica Gregory

My mother frequently received unsolicited advice from staff, and the validity of my physical limitations were questioned. I was frequently put down by my teachers and the school counselor who made no secret of the fact that they thought I was exaggerating my situation. My friends drifted away and barely anyone checked on me while I was trapped at home, sick as a dog.

I had gone from being a star student to being treated like a degenerate. What was worse, was that over the course of only a few years I had turned from being a joyful and empathetic girl who loved books, nature, and DNMs with friends, to an angry, sarcastic woman who pushed everyone away. No one cared what was happening to me, so why should I care what was happening to them? I became resentful towards people who had previously swamped me with their own emotional crises, only to distance themselves from me when I had a flare up of symptoms that I couldn’t hide. Without a diagnosis I was an anomaly, and people really didn’t seem to like anomalies.

With the help of my parents, I managed to graduate high school despite this, and promptly cut ties with all my former friends and acquaintances. I tried to push everything that happened to the back of my mind and focus on the fact that I had been accepted into my dream performing arts academy.

I believed that if I had survived the past five years, I could do anything. There would be nothing that could stop me from achieving my dreams of becoming a musician. Furthermore, I believed that leading the life of a musician was the only thing that could make me whole again. The grief and loneliness had drained my sense of self and ability to appreciate the little things in life. I needed constant adrenaline and stimulation to feel something other than the demons scratching at the corners of my mind.

The saddest part of all this was that I thought it had made me strong, when in reality it had just given me the insatiable desire to always appear strong. I rolled my eyes when people complained of not being able to go to work because of a garden variety illness or inconvenience. I thought it was weak to make excuses over something so minor, after everything that I had been through. In reality, I was the weak one. Too weak to share my true feelings, too weak to share my story, too weak to admit that the way I was living my life wasn’t working for me and had a clear expiration date.

My first couple of years of University were enjoyable but very difficult. I loved the fresh start and the opportunity to re-invent myself, but I was also still struggling with my recovery from Hypoadrenalism. I felt constantly judged by my professors and colleagues for not taking on certain opportunities or tasks when I needed to rest. Of course, I would never reveal the real reason why I had to say no to things so frequently. After what had happened to me at school, I no longer felt that anyone was worthy of my vulnerability.

Instead, I was determined to prove myself. I didn’t want to be the sick girl anymore. I wanted to be the girl who stayed out the latest, played the most gigs and taught the most students. I didn’t want to feel judged anymore, and I made the mistake of thinking that the way to do that was to change myself, rather than challenging the expectations of those around me.

woman holding a trombone
John Marcel Rousselet Photography

Once I had finally made a full recovery from Hypoadrenalism, it wasn’t long before I realized that something was still wrong with me. Even when I was only taking on a ‘reasonable’ work load, I still struggled to keep up with my peers. I constantly felt less than, which lead to me pushing myself even harder and damaging my health even further.

In 2018, I experienced another surge of chronic pain, similar to the one that I had at age 12. I started dislocating my hips and shoulders more and more frequently, and was told by multiple professionals that if I didn’t ‘get on top of’ my joint stability, I would need surgery.

As far as I was concerned, that was absolutely not happening. It would set me back with my plans to move overseas to do my Master’s degree, and after already having been forced to defer University twice due to health reasons, I was adamant that I wouldn’t ‘let’ that happen again.

So what did I do? I extended my attitude of ‘proving myself’ to fitness. I did strength training daily, no matter how unwell I was. I beat myself up emotionally whenever I had a dislocation, convinced that it could have been avoided somehow if I had just tried harder. I started waking up earlier and earlier so that I could workout daily, regardless of how busy my day was, thinking it would help.

But I just seemed to be getting worse not better. Within a few months, I started waking up with excruciating headaches and a heavy feeling in my body. At first it felt similar to the way in which one might feel the morning after a grueling workout, so I ignored it, but after about a year, I was waking up in pain everyday and was having repeated sinus infections that were seemingly coming out of nowhere. I was also extremely fatigued and frequently waking up in bed or on the couch during the day with no memory of how I got there.

woman in bed
Courtesy of Jessica Gregory

At this point I decided to check in with my GP. She did some basic blood work, saddled me with the label of post-viral fatigue, and told me that nothing could be done for me. She did not warn me of the dangers of post-viral fatigue turning into Chronic Fatigue Syndrome if the patient keeps pushing past their physical limits during recovery, something which I now find very regrettable.

I continued to force myself to work long hours after my graduation from University, and my symptoms worsened to the point of barely being able to get out of bed on some days. To some, it might seem crazy that I did not get a second opinion at this point, but I had been chronically ill since childhood, and at this point in my life, I was still dealing with the trauma of previous medical negligence and was very resistant to seeking medical attention. I was also being inundated with messages of hope from friends and family about how much they believed in me and how they just ‘knew’ how successful I was going to be in Europe despite all the challenges I was facing. The idea of letting go of that collective dream that I and everyone else had for me seemed unbearable.

All this allowed me to dig myself into a deep hole of denial about what was happening to me, and justify still moving to Belgium to do my Masters in August of 2019.

When my fiancé’s visa was finally approved a few months later, he arrived to find that my pain had become so bad that I couldn’t eat or sleep, and was starting to entertain suicidal thoughts. I was fainting frequently and had to crawl to get up and down the stairs in our apartment.

Fortunately, after a few days of this nonsense, he threatened to take me to the emergency department if I didn’t agree to immediately phone my (new) doctor. My level of distress was clear to my doctor over the phone and she gave me an immediate prescription for tramadol while we waited on further test results.

woman with her fiance and cat
Courtesy of Jessica Gregory

The coin finally dropped when I took the first capsule. My body went quiet. I realized I had been living with perpetual buzzing and burning sensations throughout my entire body for literal years. Even when I didn’t consider myself to be in a pain flare up, it had always there, simmering away in the background.

I knew then and there my life was about to change. I could never go back to the way that things were now that my eyes had been opened. I had to get to the bottom of what the he*l was going on inside of me.

This brings us back to my couch in Brussels, in January of 2020. I felt like such a failure, I was a complete physical and emotional mess just six months after making my dream move. I was so afraid that my parents would be disappointed in me. They had done so much to support me and ensure I could still study and work despite my health challenges. Were they going to think I was just throwing those years of effort away?

Fortunately, they were very supportive, and although they weren’t with me to see what my reality had become, they had clearly gathered enough of a sense of things to encourage me to focus on my health and worry about my future later, something which I’m eternally grateful for.

I went back to my new doctor shortly after this and spoke to her in more depth about what had been happening to me over the past couple of years. I also mentioned that I had been hypermobile since childhood, but had been having more and more frequent and painful dislocations in the last few years. She told me that Hypermobility was sometimes linked to a family of connective tissues disorders which were associated with several comorbidities to do with the dysfunction of the autonomic nervous system. Furthermore, she told me that severe infections and increasing age were sometimes linked with a sudden worsening of these disorders.

A few referrals later and I was finally lead to diagnoses of Generalised Hypermobility Spectrum Disorder (HSD), Orthostatic Hypotension, Sinus Tachycardia, and Fibromyalgia.

This is where the real work began.

woman with arm crutches wearing a mask
Courtesy of Jessica Gregory

The doctors in Belgium were not afraid to tell me that I would likely have to adapt the rest of my life to live with these disorders. They were also not afraid to tell me that there was no cure for Fibromyalgia, and that if I had developed it as a secondary disorder due to my untreated HSD, it was entirely possible that I would never make a full recovery.

This was both shocking and validating. Finally, I had a REASON for why I had never been up able to keep up with my peers, the tissues that were literally responsible for holding my body together were faulty!

The next six months were a blur of good and bad days, of crying and laughing, of wins and losses. I was admitted to a hospital rehabilitation program where I got to work with physiotherapists who were actually knowledgeable about Hypermobility. I also started a series of medications and lifestyle modifications, and started seeing a pain psychologist who worked hard with me on unpacking the lifetime of cumulative anxiety and depression that I had been bottling up.

woman in hospital connected to wires
Courtesy of Jessica Gregory

It broke my heart to realize how much my self-image had been inadvertently informed by the the comments of incompetent teachers and medical professionals. When I was fatigued, I accused myself of being lazy. When I couldn’t complete a workout, I accused myself of being weak. When I encountered a psychological trigger, I accused myself of being too paralyzed by my emotions. But none of this was true, I was simply sick and traumatized, and hadn’t been getting ANY of the help that I needed until now!

I worked hard on re-connecting with my former self and developing a better relationship with exercise. I now try to see exercise as something that I either enjoy, or that will help my body, or both. I try not to see it as is something that I ‘have’ to do to avoid certain symptoms or judgement from other people. I know now that if a well-meaning professional makes a comment about how my symptoms will disappear if I simply exercise or stretch more, the problem is their ignorance about HSD, and not with me.

Thanks to this process, I now also have the confidence to follow my instincts about my body. I have long suspected that I have undiagnosed allergies and sleep issues, and this year I have taken the reigns on investigating these. I have cut out all the ‘healthy, anti-inflammatory’ foods that have been triggering my symptoms and I (mostly) allow myself to rest as much as I need. Even though I still do not have official diagnoses for some of these problems, I can already feel a big difference in how well I feel when I just listen to want my body wants.

Sadly, years of pushing through my symptoms has eroded my love of music and performance, and pursuing this physically demanding career at all costs is no longer a priority for me. I have gained a great deal of life experience through all of this, and am now choosing to change my life for the better by capitalizing on it rather than pushing it away. I want to work with the body that I was given, not against it, and encourage others to do the same. I believe that my true purpose is to use what I have learnt to help other chronic illness and disability warriors (especially young women) to break through the cycle of shame and isolation that I went through.

I want people to know that they are valid even if they don’t have a diagnosis, and perhaps more importantly, I want other people to take their loved ones seriously if they say they are unwell! Many disabilities are invisible and do not fit the label of what we as a society have been taught they should look like.

I recently started my blog, Delicate Little Petal, to bring visibility to this reality by discussing my own messy journey to diagnosis and exploring ideas of self-love and self-expression as someone who newly identifies as disabled.

woman holding her cat
Courtesy of Jessica Gregory

I also recently became an ambasssador for Healp.Co. One of my first campaigns with them was #hotdisabledsummer, a project that seeks to spread images of people with all kinds of disabilities enjoying their summer and living their best lives in different ways. Some of us use mobility aids, some of us need extra electrolytes in the hot weather, and and some of us need to stay in the shade. What we all have in common is that we are human beings who are so much more than our disabilities and still want to enjoy their summer!

Being a part of this campaign has meant so much to me because of how much I have struggled with self-worth and identity both before and after my diagnoses. I have constantly felt conflicted between wanting to look ‘normal’ and not wanting people to think I am faking my disability because I don’t look sick (something which sadly has been a frequent problem for me).

Healp.co’s #hotdisabledsummer campaign has helped me remember how much I love vintage fashion and makeup and that I’m still allowed to enjoy those things even though I now identify as disabled….because guess what? I’m still a person! I can proudly display the outward manifestations of being disabled, such as using crutches or knee braces, while still taking pride in my appearance and expressing myself.

woman with arm crutches
Courtesy of Jessica Gregory

We are never obligated to stay stuck in a pigeon hole, regardless of whether it was crafted by ourselves or someone else. No matter what we are struggling with, all of us have the right to make changes, self-advocate, express our whole selves, and work towards self-acceptance.”

This story was submitted to Love What Matters by Jessica Gregory of Belgium. You can follow her journey on Instagram, Facebook, and her website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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