Good morning, everyone. I’m honored to be here today as a patient advocate, sharing my journey and the critical role diagnostic medicine and laboratory quality have played—not just in my life, but in the lives of so many others. I’m here today to be authentic, vulnerable and come with a purpose to show you my story highlighting how the work you do matters to me.
First, I acknowledge that I live and work on the traditional, ancestral, and unceded territories of the Coast Salish Peoples, including the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səl̓ilwətaɬ (Tsleil-Waututh) Nations. I recognize the deep, enduring connection these Nations have to this land and express gratitude for the opportunity to be here. May this acknowledgment serve not only as a reflection, but as a call to ongoing learning, respect, and support for Indigenous sovereignty and reconciliation
My name is Eileen Davidson, and for years, I’ve navigated the complexities of seeking a diagnosis for an invisible chronic disease and learning how to manage it. Since 2017 I have been a patient advocate, where I have worn many hats. My passion as an advocate though is as a writer, speaker and patient partner in research
Here’s a look at who I have collaborated with, been featured in or written for.
I’ve just returned from Barcelona, where I attended the European Congress of Rheumatology conference for the last week. So if I seem a little jet-lagged and in a fog, bear with me! But I wouldn’t miss this opportunity—because this conversation is too important and my passion is patient advocacy. When I saw this speaker opportunity in the Patient Voices Network newsletter – I instantly knew I wanted this opportunity – I even gave up two extra days in Barcelona for this.
Also brand new, I started a podcast with my good friend Cheryl Crow, an Occupational Therapist and amazing content creator under the name Arthritis Life Cheryl. Together we bust myths, stigmas and misconceptions around rheumatic diseases through candid discussions and interviews with experts.
But today, I’m also speaking as a caregiver—advocating for my father, who is currently in Burnaby General Hospital, fighting multiple myeloma and colon cancer. My father is a UK citizen but has lived in Canada since 1962 as a permanent resident. After retirement he traveled the world – and in that time, his permanent residency lapsed.
While we are in the difficult and overwhelming process of renewing his medical services plan coverage and his permanent resident card, we have learned that diagnostic tests are critical to keep someone alive and how you can’t put a price tag on a loved one’s life.
It is safe to say that the work you do has a major impact on my life and is a frequent occurrence for me. Between my Dad’s care and mine, I definitely experience more tests and treatments done than I see friends
When I first experienced symptoms of rheumatoid arthritis, I had no idea what was happening. I was 23—why was I constantly fatigued, battling relentless joint pain and swelling? What I was feeling was invisible, and I struggled to put it into words for others. I had no idea what was going on with my body.
Yet, when I voiced my concerns to my healthcare providers, I was met with dismissive suggestions rather than thorough examinations or necessary tests. Instead of early detection that could have made my life significantly easier, I received remarks that left a lasting—negative—impact. I began to blame myself, questioning my own reality, wondering if I was losing my mind.
- You need to exercise more.
- Just lose weight.
- It’s just carpal tunnel.
- Stretch more.
Instead of receiving the care I desperately needed, I experienced medical gaslighting —something that would shape my journey for years to come.
I had to find a doctor who would listen, who would run the tests I needed to understand why my body felt like it was failing me. Like many patients, I endured a long, frustrating process of medical visits, tests, and uncertainty.
At 26, I gave birth to my son. Swelling in the feet, hands, and face is common in pregnancy, as are fatigue, pain, and discomfort. But my pregnancy was far from easy. I was constantly monitored for preeclampsia, yet I didn’t fit the exact criteria. Each visit meant meeting another doctor, another lab technician—their focus was on getting me through pregnancy, not investigating why my blood and urine showed concerning protein levels.
Instead of looking deeper into my symptoms, I was met with questions like: “Are you a drug user?” “Are you sure you don’t have gestational diabetes?”
I was neither. What I was was a young woman suffering from an undiagnosed, invisible systemic autoimmune disease—one that isn’t uncommon. Arthritis affects 1 in 4 women, at any age.
It’s also well-documented that rheumatoid arthritis symptoms can worsen during and after pregnancy. If research confirms this, why aren’t clinicians more aware of it in practice? Because research often takes 17 years to reach the bedside—but our care can’t afford to wait 17 years.
Two years after my son’s birth, the swelling, fatigue, pain, and discomfort never went away. When I voiced my concerns, my family physician suggested I try wearing a wrist brace at night. My mental health spiraled—postpartum depression compounded by years of uncontrolled inflammation having its way with my body.
Doctors were more interested in prescribing medications and blaming my mental health for my symptoms rather than listening and helping me find answers.
Eventually, when I returned to work as an esthetician, my body refused to cooperate. No matter how much rest I got, I was still exhausted. I constantly caught infections that wouldn’t go away. After each service, I found myself in the back room, crying from the pain.
One coworker suggested I ask my physician about rheumatoid arthritis.
That’s when everything clicked. My aunt had RA. When I looked up the symptoms, everything matched. I booked the soonest available appointment with my doctor.
I was hopeful that there would be a test that would give me answers as to what was going on, but at the same time I was terrified of finding out what was going on.
I wrestled with emotions—determined to find answers yet plagued by self-doubt, wondering if I was just being dramatic, if this was all in my head.
I asked my physician for an RA test and a referral to a rheumatologist. I feared she would dismiss me, as she had so many times before.
Her response? “I don’t see any visible swelling, and you’re awfully young for RA. Maybe fibromyalgia.”
Still, she handed me the blood test requisition and referred me to a rheumatologist—not to confirm RA, but to rule it out and diagnose fibromyalgia instead.
I left that appointment in tears. I knew little about fibromyalgia, but I did know the stigma surrounding it. The doubts in my mind grew louder—was I imagining all of this?
Then, with a stroke of luck, a new rheumatologist arrived in town just weeks later.
And that’s when I finally heard the words that changed my life: “You definitely have rheumatoid arthritis.”
I should never have endured six years of being dismissed, unheard, and unseen. I should never have experienced medical gaslighting when I desperately needed care. I should never have had to ask for the test that ultimately changed my life.
What should have happened?
When I first complained about my pain, someone should have properly examined me and ordered tests to rule out common conditions that cause chronic pain.
Here’s the reality: diagnostic errors, delays, and misinterpretations lead to prolonged suffering, incorrect treatments, and emotional distress.
In autoimmune diseases like rheumatoid arthritis—where early intervention is crucial—lab quality can determine whether a patient finds relief or endures years of unnecessary pain.
I have a number of diagnosis – Rheumatoid Arthritis, osteoarthritis, fibromyalgia, general anxiety disorder, clinical depression,
My CRP has been averaging 20-25 for the last year despite being on my , I’ve developed secondary hypertension and it is suspected I may have another form of autoimmune arthritis – possibly axial spondyloarthritis, vasculitis or lupus – but if you know rheumatology a diagnosis is never linear.
The scary thing is, the wait time for these tests and appointments close the gap for fast, effective treatment with each new diagnosis.
I’m currently waiting for an angiogram, ultrasound and MRI and each month I have to schedule in monthly blood work.
I’ve never been a fan of needles, and the thought of medical tests used to terrify me. But my rheumatoid arthritis diagnosis forced me to sit with that discomfort—to remind myself that these tests lead to answers, better quality of life, and sometimes even life-saving treatment. I’ve had to learn to trust the skilled professionals caring for me, even when fear creeps in.
Now, more than a decade into living with RA, I still have to push myself to keep up with the tests I need—whether they’re routine or entirely new to me—even when burnout makes it tempting to avoid them. The pain of tests isn’t just physical, but also emotional.
I’ve had my fair share of tests gone wrong – some even having me end up in the emergency room after. I’ve walked out of blood work appointments without actually getting my blood drawn because no one could find my veins.
I’ve been blamed for my “difficult veins” because I have tattoos. Over the years, I’ve learned to advocate for myself—to speak up when necessary—but also to accept that some discomfort is inevitable. What I don’t accept is being blamed for them not doing their job properly. I’m well aware a good phlebologist will feel for my veins and not rely on seeing them.
During my last Rituximab infusion, the nurse had to try nine times to find a vein. It was her second-to-last day on the job before retirement. The next day, I sent her flowers—I didn’t want her final days in nursing to be marked by frustration.
I’ve learned to become a patient patient, it makes it easier for us all. I understand I have difficult to find veins and I do my best to prepare for my regular blood work or infusions.
Recently, I’ve watched my father endure needle after needle in the Burnaby General Hospital, to the point where they blew out his good veins and the technicians struggled to find one. Eventually, they had to bring out the ultrasound just to find one. I remember watching that moment, feeling a strange sense of envy—wishing that, just once, finding a vein could be that simple for me.
From blood tests measuring inflammatory markers to antibody screenings that confirmed my condition, laboratory diagnostics were essential in getting me the answers I needed to understanding what was happening inside my body.
Yet tests don’t always tell the real picture. One time I was visiting my rheumatologist complaining about pain yet my labs were coming back showing very low CRP and a negative rheumatoid factor. She looked at me and said “ Let’s not focus on the lab results and focus on how you are feeling”. I was still experiencing a lot of pain and fatigue, even though my biologic medicine at the time had reduced my inflammatory markers and I was near remission until that medication failed me. One of the most important messages I have learned as a patient is that I did not fail my medication, the medication failed me.
I needed to understand that the irreversible joint damage I have from RA will always cause me some level of pain. I’ve also had to learn the difference between my regular chronic pain with well controlled disease and what being a rheumatoid arthritis flare is like. That is difficult because every waking moment I feel my chronic illness in every part of my body.
After our conversation she sent me to another rheumatologist who specialized in diagnosing patients with fibromyalgia – a disease difficult to diagnosis. That’s when I received my official diagnosis of fibromyalgia and had more answers.
Another time she sent me in for an ultrasound on my hands, which helped me understand the pain I was experiencing wasn’t just from rheumatoid arthritis but also osteoarthritis.
In my work with AiArthritis – I write about 22 different autoimmune and autoinflammatory diseases – many of which have a long and lengthy process on how to diagnose and treat.
Traditionally, treating rheumatoid arthritis has relied on a frustrating trial-and-error approach, otherwise known as step therapy. Patients like me cycle through medication after medication, hoping to find one that works—or, in my case, one that my rheumatologist believed would be the best option for my moderate to severe seropositive RA.
I needed biologics, but I was forced to start with DMARDs first and remain on them for a year.
I have been on countless medications now and even more side effects to come along with each medication. From high blood pressure, thoughts of suicide, increased risk of infections, weight gain, a rare copper deficiency, to vomiting and nausea, that is my normal living with a systemic autoimmune disease.
Step therapy—the practice of requiring patients to try and fail certain treatments before accessing more advanced options—often does more harm than good. It delays patients from receiving the right treatment, prolongs suffering, and can lead to poorer outcomes.
One scary fact I learned while in Barcelona was that rheumatic disease patients experience the poorest quality of life out of different disease categories.
Beyond the physical toll, the emotional burden of this process is immense. The constant cycle of hope and disappointment, the frustration of feeling unheard, and the fear of worsening symptoms take a serious toll on mental health. Many times I went to my rheumatologist asking for relief but told me I needed to give the medications another few months. It’s exhausting to fight for the care you know you need while watching your body struggle against inadequate treatment.
Fast, effective treatment is always best. The longer we wait, the harder it becomes to regain control over our disease and the comorbidities pile up—not just physically, but emotionally too. Living with a chronic illness and all the often painful tests do create a sense of trauma.
If I could wish for one thing, that is precision medicine. Hopefully this is not too far off in the near future either but we are not there yet. Instead of the frustrating trial-and-error approach, it offers a way to match patients with the right treatment from the start—no more cycling through medications that might not work, no more unnecessary side effects. I wish for a better quality of life.
Imagine what that could mean:
- Faster access to the right treatment—no more waiting months or years to find relief.
- Fewer side effects—because I wouldn’t have to take medications that were never going to work for me.
- Better outcomes and quality of life—because treatment would be tailored to my body’s unique needs to fight this disease.
I hope for a future where precision medicine is the norm, where patients don’t have to suffer through years of uncertainty just to get the care they need.
I hope for the day I can climb a mountain again with minimal pain and fatigue – the day I can say I am in remission.
The future of diagnostic medicine is exciting.
Here’s my call to action:
- Continue advocating for quality improvements in laboratory processes.
- Embrace technological advancements in precision medicine to optimize patient care.
- Listen to patient stories—our ex periences hold insights that data alone cannot capture.
When diagnostic quality improves, lives improve and disease has less of a devastating impact on our lives.
Thank you for allowing me to share my journey and the importance of diagnostic medicine in rheumatoid arthritis care – and my fight to keep my father alive. The work you all do is so incredibly important.
I hope today’s discussions inspire action toward higher standards in laboratory quality and a future with precision medicine.
