Personal Story
Jess
The Beginning
Hi, my name is Jess, and I live in British Columbia, Canada. I was officially diagnosed with Autoimmune Atrophic Gastritis and Pernicious Anemia in August of 2022. However, I can recall symptoms now that had I known the variability in symptomology then, perhaps I could have advocated for myself differently.
I started noticing at the tail end of an unhelpful relationship I was in for over 2 years and while in my 3rd year of university, my exhaustion levels were so significant that I would have to cancel plans, was unable to get up and move in the morning and was experiencing anhedonia without really noticing.
Between 2018 and May of 2022, I graduated with my bachelor’s degree, started a master’s degree, got into a new relationship, adopted 2 cats, and started a new job. All the while I continued to struggle with lethargy, exhaustion, fatigue, chronic widespread body pain, tingling in my hands and feet, horrible gnawing, burning gut rot like stomach pain that was present before, during and after eating. Basically, anytime I was awake I felt unwell. I was depressed, anxious to leave the house, and fearful that this reality was my new normal. I had skin issues, bloating, epigastric pain, chronic nausea, feeling of fullness after small amounts of food, and chronic diarrhea, at times having upwards of 10 bowel movements in one day. I lost 45 pounds. I still thought, “wow, aging sucks” … I had just turned 30.
The Impact
My family has never really understood me; therefore, they don’t really understand the symptoms of this chronic illness. The family members who I have discussed this diagnosis with wonder what I am not doing that I should be doing to help resolve the issue, not understanding that this diagnosis is chronic and lifelong. Like it is my personal failure for not being more determined, productive, or proactive, when in reality my body is attacking itself and creating a whole bunch of debilitating symptoms that I deal with on a daily basis. Thankfully, my now husband offers me the space I need to rest, the flexibility to determine my capacity without judgement or manipulation, and the love I have been looking for my whole life that feels like unconditional positive regard.
The Medical Journey
I finally decided to address my chronic fatigue, nausea and increased bowel movements with my GP in March 2022. She wanted to do some exploratory blood work as a starting place as she agreed that my gastrointestinal symptoms were more significant than we once considered. Upon getting my lab work completed, I received a call from my GP stating I needed to start supplementing B12 immediately as I was experiencing megaloblastic anemia likely caused by very low B12 levels. In addition to this, my ferritin levels were also very low.
Without an overt cause for B12 deficiency, I was referred to gastroenterology to complete a full gastroscopy to inquire about the etiology of this deficiency. Prior to the colonoscopy and endoscopy, I returned to the lab to get more blood work done which confirmed need for gastroscope as I tested positive for parietal cell antibody and was flagged for elevated fecal calprotectin. The scope, complete with various biopsies, confirmed the diagnosis of autoimmune atrophic gastritis and Pernicious Anemia. I felt grateful to have an explanation to why I felt the way I did, and some hope, that although this rare and insidious disease is my reality, I am lucky there are treatments available that do not include eating large quantities of regurgitated organ meat as once was the treatment.
Treatment
Treatment initially started with oral B12 supplementation which I recognize in Canada is best practice for B12 deficiency, however, many months of supplementation with very little change in B12 levels when retesting labs. Don’t even get me started on the value of retesting B12. Six months after official diagnosis I told my GP I was interested in B12 injections as I was still experiencing every symptom and by that time, I had read about the efficacy of B12 injections for pernicious anemia. I was given a prescription and was told they could be administered monthly at the pharmacy.
This process was timely, costly, and unpleasant overall. Luckily in British Columbia it is possible to purchase liquid injectable B12 over the counter, and as I learned that many others with Pernicious Anemia started self-injecting their B12 I considered this as an option for myself. I decided to explore the world of naturopathic medicine for various reasons, one of which was that I just wasn’t feeling any better with the treatment I was receiving.
A few things happened after this appointment– I learned that my ferritin numbers continued to lower despite taking iron supplements, and that I likely need a larger quantity of B12 injected more frequently. I took the naturopaths advice and began self-injecting more frequently and larger quantities and this was the first noticeable improvement in my recovery journey. It was not immediately, and I did not feel how most people say you feel after a B12 injection, but slowly some symptoms started to reduce. Self-injecting B12 regularly for the rest of my life is my new reality.
This led to me advocating for myself further to receive iron infusions as I learned that treating the B12 meant that my body was using more iron which was why my iron continued to lower. Getting my iron to an adequate maintenance level was the second noticeable improvement in my health.
Life Today
Life today is different than it was in 2018 when my symptoms started to emerge. I have been able to regain a sense of control over my life as my symptoms are not always dictating my capacity and abilities. I have an amazing job as a therapist helping others through addiction and trauma. I have a lovely home, a supportive partner, and two adorable cats. I have many symptoms present at different times; however, I can respond differently now. I am kind to myself, recognizing that being diagnosed with this autoimmune condition was outside of my control. It has become easier to listen to my body and allow myself to rest when needed, take breaks when needed, and say no when needed. Recognizing that this condition is not going away, I am learning to embrace this new life and allowing myself to ride the waves and roll with resistance.
Looking Forward
Looking forward means acknowledging that this journey doesn’t end, it just becomes easier over time. More awareness, education, and support have made the difference in helping manage symptoms to a level that impacts my daily life less. I can self-inject with less fear now, and I have a nurse friend who gives me the injections when I don’t want too. I talk to others about their vitamins and encourage people I know to test their B12. Like all difficult things that have occurred in my life, I am working towards using this experience as an opportunity to support others and push myself to grow in ways I was not fully aware of.