So this is new. I never thought that I would create a blog, let alone want to have my thoughts on paper for whomever to read. One thing about battling chronic illness, especially with undiagnosed question marks, you start to see the bigger picture. The fight for my health was not just for me anymore, I wanted answers for my family, and those who come after me so they never had to question what they were going through, or if there was a genetic component after all. This has been a humbling experience, to say the least.

The big question is, why now? Well, truth be told, the fight to be heard and diagnosed started just over 6 years ago. I was 25 years old, and the aches and pains, the symptoms I had learned to adapt my life to, started to continue to show through despite the constant changes and adaptations I made. I had met a friend online, and little jokes had come up about my hypermobility, probably the usual “party trick” talk, and realized that the things I had adapted my life to, or was experiencing at a young age, was not normal. She was diagnosed with hypermobile Ehler’s Danlos Syndrome, and recommended looking into connective tissue disorders and to speak with my doctor about it, to see if this is a possibility for my ongoing issues.

Just before lockdown, in February of 2020, after complaining about non-stop pain to my doctor for the last two years (which actually goes back even further), I had wondered about the “why” behind my hypermobility. No one else in my family was as bendy as I was, my Mum is hypermobile in a few joints, but no one was bendy all over. Any major joint, you name it, mine hyperextends. I have heard time after time that I have the “worst” or “most” of something that the specialist has ever seen. I have been labeled by my chiropractor as the patient with the most range of motion he has seen. A podiatrist at 19 told me I have the worst stability and feet he has seen of anyone my age, just to name a couple of the accolades I’ve gained over the years. 

I met most of the criteria (now all) with the knowledge I had of my family background at the time, which was incredibly minimal, but needed to ensure genetic testing for other types of Ehler’s Danlos Syndrome, especially the vascular kind with my tachycardia. My referral was sent off to the IWK in Halifax, and was told there would be a long wait of 2-5 years, but we would get to the bottom of this. I’m no stranger to long wait times, I know our health care system is incredibly overworked, and we headed into one of the worst health crises of our time. This begins the referral that never happened.

With vascular Ehler’s Danlos Syndrome, you are even more susceptible to aortic dissection than the other EDS subtypes, so when you are being evaluated for hEDS, or EDS in general, it is incredibly important to rule out the vascular subtype. My doctor proceeded to order a chest x-ray, which showed an anomaly on my left lung, which recommended an elective chest CT to identify what the spot was. I went in for my chest CT in November of 2020. To this day, I’ve not had a doctor review this and explain the results to me, 5 and a half years later.

I will always say I am patient until I’m not – and that is usually once something is incredibly mishandled, or if I’m not informed on what the process or how long to wait for. Early in 2024, my joint pain, neurological and gastro symptoms continued to worsen, I was then referred to a rheumatologist, and an endocrinologist to ensure follow up with my previous Graves Disease diagnosis and to ensure that all systems are covered while we awaited on the IWK for genetic testing. Thankfully my rheumatology panel was coming back negative from things like celiac disease, rheumatoid arthritis. The rheumatologist I was referred to had the shortest wait time, and my doctor was desperate for answers to try and navigate my care, “I will refer you to another rheumatologist if you don’t like him, just see him first”.

My first ever appointment with my rheumatologist 9 months after the referral went out in October of 2024, I no-showed my first appointment, ever. I should have seen “the signs”, but my appointment was rebooked for 6 months out, April 2025.  What I didn’t know, in November of 2024, my entire life and health would be flipped upside down.

In November of 2024, I tested positive for COVID-19 again. I didn’t feel as afraid as the first time I had it, felt like a bad cold, and I had attributed my long term symptoms to long concussion symptoms. I never thought it would lead me down the cascade that it did. I had the same symptoms, cold/flu symptoms and even lost my appetite again, but I knew in a few days it would come back, or so I hoped. To avoid becoming too graphic, if you’ve experienced the gastrointestinal symptoms from COVID-19, then you know what I speak of.

Nothing would ever curb the nausea, it became chronic and an every day occurrence. I began to reach out to my doctor, and nurse practitioners in January of 2025. Abdominal ultrasound in April of 2025, after multiple ER visits. Clear, thankfully, but one spot on my liver that I’d never hear the end about despite having normal liver levels. I saw my rheumatologist for the first time in April 2025. I went alone. Dismissed, minimal exam, and tagged with “hypermobility fibromyalgia”, and “lose weight and have a nice summer”. As I told him, the weight was already coming off. I had lost 40 lbs since December 2024 at this point. 

Labs in June 2025 started to come back slightly abnormal, but nothing enough to raise red flags. My brain instantly thought it was my thyroid, but my Graves had been in what I thought was remission – but that wouldn’t be the full answer either. By June of 2025, I had lost 50lbs. At a 5’3” frame, even 15lbs is noticeable. I started to get people commenting on my weight loss. As a society, we celebrate weight loss, because it’s usually for a healthy reason. My weight has been entirely tied to my autoimmune disorder, which has absolutely caused some body self esteem issues. I disappeared from social media, because I did not want to post any pictures and potentially feed a negative narrative. Until I couldn’t hide it anymore.

I knew I would be visiting family in Ontario that summer. We had purchased Three Days Grace tickets back in February of 2025, just a month after my grandfather’s official stage 4 lung cancer diagnosis. I came out of hiding to hopefully avoid the shock of seeing my family, and things were still not improving. Unfortunately, just 8 months later after the official diagnosis, I’d lose my grandfather to his battle with cancer. 

Battling grief for the first time, trying to sort out my health problems, rejoining dance classes after 12 years of retirement, I tried to do what I could to make my body healthy, and “keep pushing”. I kept pushing despite eating maybe 400-500 calories a day, daily vomiting, keeping up with my full time job, navigating my health crisis while being dismissed, and then officially losing my doctor in September 2025 to an early retirement. “You’re too young to be in pain”, “you’re too young to be sick”, the usual excuses I’d always hear, but society says to “keep pushing” and we view ourselves as “weak”. That would turn out to be my downfall.

October 2025 I get a hold of my medical record. I could see everything, x-ray interpretations, CT interpretation, the last several years of bloodwork, appointment notes, prescriptions. I came across my chest CT that I had done in November of 2020, I had forgotten about it, and had pulled up the report. As I mentioned above, I’ve still not had a doctor go over the results in regards to this scan with me. The anomaly they found on my left lung appeared on the chest CT, stating there’s an entire section of my lung filled with several cysts, and likely could be something called “congenital pulmonary airway malformation”, specifically type 2. Reading this after your grandfather just passed away from lung cancer, it freaked me out. 

I found my IWK referral notes. I read through what was sent, and my heart broke. As I had mentioned there are some serious forms of EDS that really need to be ruled out. My doctor had sent off the referral, and it was returned. The IWK had likely noticed an increase in referrals, and it said if I was hypermobile and symptomatic, to resend the referral back with symptoms included and I’d be put on the waitlist. Hypermobility alone isn’t always a problem, so I understood why they re-requested it. This was when my doctor started to order the chest x-ray and chest CT to rule out or rule in vEDS. She believed she re-sent the referral, but she never did. I waited 5 and a half years for a referral that never happened. 

That lit a fire under my ass. I became so frustrated, overwhelmed, dismissed, angry, exhausted, upset, you name it. My doctor believed me, but the overworked health system we are currently under, caused her to make a massive mistake. Once I got a hold of my medical record, I was able to try to understand a lot more, my research increased, my questions to my family about what they deal with on a daily basis and understanding my family history. The average time it takes for an EDS or a connective tissue like disorder is 10 years. I lost 5 ½ years being told it was sent, we were waiting, I have a lot of time to make up.

2026 deserves a story in itself, car accidents, lawyers, the continued fight, more dismissal, new referrals, medical leave. I hope to share the entirety of my life, from dance to music and interests, and the entire medical side of things. Bring light to the hard to talk about discussions, to shed light on the true crisis of our healthcare system, the resilience and strength of the day to day living that no one sees. This has truly challenged me in ways I did not picture possible, and one of the biggest lessons I believe is important for all of us in 2026 and beyond is to not only show ourselves grace, but grace to those around us as you never truly will fully understand the battle they may be facing day-to-day.